Possibility of osteoarthritis?

Hey all.

As some of you have seen I have been having a LOT of issues with my joints, especially recently.

To be honest I've had problems with one joint or another since I was 13, so well before the crohns. I had a lot of pain in my shoulders / neck and got sent for physio therapy. The therapist said that the muscles around the joints had wasted away, so movement was more effort and caused pain, the more I moved the more they would hurt.

On and off since then, I've had problems with joints. It's now in my shoulders, wrists, neck, lower back and hips. At times my hands have swollen up and been very stiff and painful.

Right now, it is my hips and back that are causing the most pain but I can feel my wrists / hands starting to throb now so I feel as if they are going to flare up in the next day or so.

I've been to my doctors several times about this and it's been pretty hard to get them to take it seriously sometimes. I don't see my GI for 5 months and he says it's better to get the opinion of another consultant, an endocrinologist, which I did and basically got 'I don't know.... Here's some osteopenia meds, go back to the other doctors ' . I've had xrays of my back, shoulders and ribs but because there's nothing on them I keep getting told that there's nothing really wrong.

I've done a little research and found that osteoarthritis in particular is hard to diagnose and has no definitive test so won't always show on an xray.

I'm in so much pain I can't walk or sleep most nights. The doctors say it's normal aches and pains. There are some doctors in my surgery that I know will help but they have long waits for appointments and I want to go in prepared and make the most of them. I Know this is not 'normal' .

Any input is greatly appreciated.

I know how horrible those pains are when they swell up or just feel inflamed. I'm so sorry you are in so much pain. You may indeed have a version of arthritis but joint pain is all too common with crohn's.

You could be suffering from crohn's arthritis which creates the same pains but doesn't contribute to the same joint erosion you would see with arthritis. Theoretically while not fun, it's a better problem to have. See section on peripheral arthritis here: http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

Are you on a biologic now? My doctors say Remicade will help quell my joint pains. I also have Osteoperosis and will start a drug for that but it shouldn't cause joint pains.

Any chance you could get an appointment to see an rheumatologist? It's a bit unfortunate to see they referred you to an endocrinologist instead. Anti-tnf are suppose to be helpful on that aspect. Unfortunately for us, there are many treatment we don't really have access to because of IBD. Generally they start by treating with Nsaid, and then they move up the ladder up to anti-tnf.

Alternatives are methotrexate and corticosteroid injection in the joint themselves. Due to my past reactions (aswell as my own fears that my joint issues were started by the anti-tnf, I've refused to go back on them) but I'm considering the injections. I think they can inject up to 3 times a year and it suppose to bring relief for a while.

Hypotoxic nutrition may help too but it's highly difficult to follow... anyway, it does help me when I am disciplined enough to keep up with the no gluten, no dairy, no processed/additive and no heavy cooking (steaming only). It's restrictive and difficult to integrate that with a social life...

Thankyou both for responding . My hands have swollen a little now, although its not as much as usual.

The only medications i've ever had for my crohns were prednisolone, entocort, and briefly pentasa. Im not on any maintenance medication (although I'm not 100% sure its what's best).

I dont have osteoparosis currently, I have osteopenia, but they are finding this hard to treat because they cant give me calcium supplements. I know it doesnt usually cause pain though, which is why I'm so sure its not normal.. I was reffered to endocrinology because of this, although i would prefer a rheumatologist really.

I am already gluten free, but other than that I dont really fiddle with my diet much, when my crohns flares I cut down fiber but thats about as far as it goes. I have so many other complications where diet can be an issue that its best to just to stick to what i know sometimes.

I found this really interesting about arthropathy as an EIM of Crohn's it is fairly long but gives a detailed description of each type of arthropathy associated with CD/UC.

Occurring in 5–20% of IBD patients, peripheral arthritis classically involves large joints and is asymmetric.5 Peripheral arthritis is also classically rheumatoid factor–negative (and, hence, seronegative), nondeforming, and nonerosive, although erosive lesions mimicking rheumatoid arthritis have been described.

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The study goes on to define the different types:

Type 1 peripheral arthritis is pauciarticular—involving fewer than 5 joints—and is strongly associated with IBD activity and other EIMs. The knee is the most commonly affected site. Occurring in approximately 3.6% of UC patients and 6% of CD patients, fares are self-limiting, with attacks lasting 5–10 weeks.6 Flares usually parallel the severity of bowel symptoms.

Type 2 peripheral arthritis is polyarticular, independent of disease activity, and associated with fares that can last months or years. The metacarpophalangeal joint is the most commonly involved site. Less commonly involved sites include the knees, ankles, shoulders, proximal interphalangeal joint, and metatarsophalangeal joint. Type 2 peripheral arthritis is not usually associated with other EIMs, with the exception of uveitis. The severity of this arthritis appears to be independent of active bowel disease.

Spondylitis can occur in 1–26% of patients with IBD. Males are more frequently affected than females. Typical presentations include back or buttock pain, which worsens in the morning or after rest and is relieved with exercise. Spinal pain is often felt moving from the lumbar spine to the cervical spine. Buttock pain often alternates with chest wall pain. A physical examination may reveal limited spinal flexion and reduced chest expansion. AS occurs in 3–12% of patients with IBD. Nearly all IBD patients who are positive for human leukocyte antigen B27 will develop AS. Axial involvement is independent of gut pathology.

Asymptomatic sacroiliitis is increasingly being recognized in the general population, particularly due to improvements in the sensitivity of magnetic resonance imaging (MRI). A Spanish prospective study looked at 62 IBD patients without axial symptoms who underwent MRIs; sacroiliitis was radiographically detected in 24% of patients who were asymptomatic.7 Approximately two thirds of patients had evidence of CD consistent with previously reported distributions.

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It has some other good info as well about treatment and the other EIMs associated with Crohn's. Here is the source, if you want to read through it.

I hope you are able to find some answers.

That's really interesting clash, thankyou!

I did meet some of the criteria for AS, my back bends differently to normal and I do get pain in the mucsles in my bum... I've also had a history of pain in my chest, frequently in my rib cage. I had one doctor mark my back with a pen where the sections looked slightly misaligned and he said the misalignment was displacing my ribs slightly so I'd get rib/chest pain... But then no other doctor has seen what he saw and all my xrays were clear as far as I know. He had examined my back with me bending through which the others didn't.

I can also see some parallels with the type 2 arthritis as well since my joint symptoms don't seem to be connected to the other symptoms, as I said they really started years earlier than the crohns.

About 4 years before my son started complaining of symptoms that started the whole ball rolling toward diagnosis he complained of joint pain. He played sports year round and on a fairly competitive level so he was always either at long practices or games. We went to several specialists who were pretty much stumped as to what was going on. He had xrays, MRIs and other tests trying to pinpoint the cause.

This eventually led to him pulling away from sports, and the most we got was that he could have just over worked every thing and needed a break. Since his CD symptoms started he has flares of joint pain when his CD flares so his is more typical of Type 1 and he would probably say it is the worst symptom of his flares, well that and the fatigue.

If you do decide to take the Rheumatologist route it might be good to find one that is familiar with CD and it's EIMs. Again, hugs and support!!

I'm going to try and get in at my doctors tomorrow and get one that I know, some of the ones that don't know me seem to think I just go along for the sake of it with every little ache and pain .

I will be taking a screen shot of this thread so I can remember what I'd like to bring up.

When I was younger I had physiotherapy for my shoulders... Any opinions on how beneficial this might be? Has to be better than pumping myself with pain meds all the time!

Struggling tonight . It's 2.36 am here and my spine feels like there is a knife stuck in it and my hip is not much better... My shoulder is stiff and feels... Heavy.. Really hoping that I'll get somewhere with all this soon. It's so hard to get through to my GI /endocrinologist or I'd be calling one of them .. just needed a little moan. I love this place, my poor boyfriend has sooo much going on himself and I hate adding to it. Thanks so much for listening you guys!

Seeing a Rheumatologist may be best if you can get in. They can do a gene test through blood work to see if you may have AS. Mine tested my blood and told me that I don't have the gene for AS and can't get it so had to just deal with physical therapy for my joints for now. I have osteoarthritis, it was confirmed through x-ray but also seen in MRIs as well (clearly but you didn't know I had MRIs so thought I'd throw that info in there ). My physical therapist said that my joints over extend which creates more pressure on the joints and causes more inflammation when they're already inflamed so that's where he thinks my extreme back and hip pain comes from. Right now I'm doing a lot of core exercises to try to strengthen the surrounding muscles so my joints wont over extend as much (especially bad for load bearing joints like your back, hips and knees). PT is worth a try for now. At night I take Tylenol 3 for the pain. Its a fairly mild narcotic pain killer.

As mentioned biologics are awesome for joint pain and if you do have AS, biologics treat that as well. When I was on Humira my joint pain went away completely.

See if you can get into a Rheumatologist and have some MRIs done on the spots that hurt the most. Also talk to your GI and Rheumy about treatment for the joint pain. They may recommend biologics.

Thanks Jennifer, I think I might have had some bloods for AS and had xrays but never had the results... If I don't get back in with the doctor that ordered the tests then a lot of things slip through the net because the next doctor doesn't go through my notes. I don't think I had a genetic test though.. Just CRP.. which was high..

I think Tylenol is like our paracetamol? Which currently is having zero effect on me. But I don't want to form a habit of taking my tramadol for it.. Which has been suggested by one clueless doctor.. Who also told me it was 'normal aches' that would go away... Well now it's just getting worse.

Might seem a daft question but how easy is it to get a referral like that in the UK? Does anyone know? My GI keeps saying ask the endocrine.. But they are about as much use to me as a chocolate tea pot
If I get into the right GP I may be able to get them to give me some sort of referral. I was meant to get one year's ago for my shoulder pain and never did, then I moved surgeries and it all got lost in the system.

Thanks for your help, means a lot .

I honestly don't know. Astra do you know how long it takes to get a referral in the UK? Say if you wanted to see a Rheumatologist and went through your GP to get a referral?

I am sorry that you in such pain. I hope that they get you into the right doctor soon!

I went to the GP this morning, she had a look at my hips and said all my xrays and bloods had been clear so there's nothing to be really worried about as such.

She is referring me to a rheumatologist, I didn't even need to ask . That's all I've been wanting my doctors to do all along so I am much happier now feels like they are finally taking this seriously .... It's only taken 7-8 years

I am so glad that you have the referral to the rheumatologist! I would make sure that you bring your records from your GI too!

Thankyou , my medical notes will automatically go over to the rheumatologist, most things are on the computer system that is available throughout the health board and the paper notes with all my pathology will be sent to the correct hospital in advance if it is not the hospital where i usually see my GI.

Have you tried swimming,or the gym.i,m rotten with arthritis through work and injuries over the years it really helps me and seems the have strenghtened my joints.

Yes.. swimming! Can't do laps anymore due to the adhesions and surgery site, but just being in the water and stretching or doing lite water aerobics is the BEST exercise I have ever done for my connective tissue disease! And it is very calming too...maybe like youga in the water or something! And it really does gently strengthen the muscles that support your joints.

Unfortunately I can't actually swim and my nearest swimming pool or gym is 2 buses away. Which sucks a little. But I do walk quite a lot... Although recently this seems to be making things worse.

I have started a symptom diary ready for when I see the rheumatologist, it could be a few months but the more information I can give the better!

At the moment my right wrist (my dominant arm) has swollen and so have my feet. Trying to get pictures of this to show the doc incase they have settled by the time I get an appointment.

That's a good idea with the pictures. You can try icing it to bring the swelling down (RICE method, rest, ice, compression (use and ACE bandage) and elevation).

Also you don't have to be able to swim. The resistance of the water alone is good for the joints. You can also hold onto the edge of the pool and just kick your legs behind you for a while. When my back was hurting a lot I could hardly swim due to the pain but floating on my back helped (you can hold onto the edge of the pool above your head and let your body float up and do mild kicking). That's if you want to take the trip out to the pool.

When my joints hurt really bad in my hips in back I'm usually in the bathtub as it reduces the pressure on the joints and for me warm water helps as well.

I've had problems before where I've had swelling and it's gone before I've seen the doctor and then they've not listened, figured they can't do that if there are photos!

Hmm that's a good idea, I'm not very confident in water, I slipped in a swimming pool as a child and went under. If I have someone I trust with me I'm alright if I'm closish to the edge, so it would still be more than worth a try .thankyou.

I'm loving my bath at the moment, only down side is we still have an old fashioned emergen heater . We have to switch it on and wait an hour of two if we want a bath. But I have been loving it. And my wheat cushion.

Edit - my wheat pack says it can be put in the freezer, was wondering if anyone has tried doing this? I normally just put ice from the ice tray in a frezer bag and wrap that in a cloth, but then it soaks everything as it melts.

Sorry if this sounds a daft question, is ACE just the brand of bandage? Or do they give more support / comfort? We have stretchy compression bandages in the house already but they aren't those ones.

Sorry that's just what I call these things. It is a brand name.



As for the wheat pack (had to look that up), we have one that's filled with gel that you can use hot or cold. Being wrapped in fabric it doesn't get everything soaking wet. There is some condensation but not a lot and it also stays cold longer than a bag of ice. Problem is for the gel pack is that it takes a while for the temp to go down if you want it hot so its better to have one for hot and one for cold if you use them often. See how long your wheat pack takes to warm back up and decide if you need two.

Okay, thanks jennifer those are the ones that we have at home, so I will remember to do that, thankyou .

Yeah I did wonder how long it would take to get it to the right tempurature and then for it to be re-usable as a hot one. I may just find out where my boyfriend got the one I have and see if i can get another one anyway, sometimes its useful to have more than one since I can have them on two areas or have one being used and one ready to go .

Thankyou for all of your input .

Just a little update.

I went to my GP earlier because of a UTI and I managed to get in with one of the very nice doctors that user regularly. She has given me another doctor's note to allow me to claim ESA until they know what's going on with my joints and she has told me that she wants me to go back to see her if I don't hear from the hospital soon as she says that I should be under the fast access clinic, so if I don't get anywhere she will chase them up for me .

She also gave me a blood form to get some bloods done since my joints were inflamed again today and she could see they were swollen, so she wants my inflammatory markers looked at.

I am sorry you are having joint issues. I wanted to give you my background as it sounds somewhat similar to what you are dealing with. I have Rheumatoid Arthritis, Crohn's disease and Chronic bronchitis. A few doctors I have seen have called this the tri-fecta. I also have osteopenia from my last dexa scan. I see both my rheumy and GI doctors occasionally. A lot of the meds used for one can treat the other, however I am happily only on LDN at the moment and am able to avoid the bigger drugs at this time. It is pretty normal for people to develop multiple auto immune disorders as with myself so it may be possible that you also have RA or some other form of arthritis. I wish you luck in getting a diagnosis so that you can move forward in your treatment. I have found hot baths with Epsom salt and my wonderful heating pad to help ease the pain some. Take Care:ghug:

Sorry Jennifer & valleysangel92, I didn't reply to the tag, not feeling so good lately, glad you got the referral tho, good luck xxx

Since the last appointment my feet have swollen a lot more, my ankles are the size of golfballs, my shoulders are stiff and tense, my hips are painful and its hard to walk at times, my hands are stiff and puffy and my wrists are sore.

What's a reasonable amount of time to wait in this situation? I don't want to keep going back to my GP but I can't really walk and I'm using compression bandages, ice, heat , resting as much as I can and taking basic painkillers.. Have any of you called your IBD nurse for anything like this?

I'd call whoever I could honestly. Let them know that you don't know the cause and aren't sure what to do. If it gets worse to where you can't really move it or its far too painful then please go to the hospital for emergency care.

I just tried to call the IBD line and it says that they are having to offer a reduced service, from what they are saying it seems like they only want urgent calls, so I left it for now, it's really awkward because there isn't much else I can do that I know of.

So much for rapid access! I just got a letter through, waiting time is 26 weeks, might be more if I request a specific hospital ( which I might have to since some of the hospitals in my health board are pretty much impossible to get to without my Dad taking time off work to drive me) .

I'm going to have to go back to my regular doctor to see what she says. I can't be like this for six months .

There's no way to leave your GI a message? I know mine has an emergency line but they do have a messaging service and you can leave a message with the front desk to give to the GI.

6 months is a long time. I hope you can get in sooner and hope that the closer ones to you are the better doctors.

I can call and speak to his Secretary but they didn't like that the last time I did it, she got pretty brisk about it. plus each time I tell my GI about my joints he just says wait for the others.

Thanks Jennifer, six months is ridiculous even for the nhs. I'm hoping that my GP will be able to get things moving faster. things are just getting worse every day .

I just got back from the doctors, she is going to write to the rheumatologist but they have no idea how long it might be before I will hear back.. So playing a waiting game now.

My bloods showed low ferritin and since I can't tolerate the prescription iron tablets she wants me to try multivitamins with iron in them and then retest in 3 months. If my iron is not improving then they will have to think about an infusion.

The pain in my hips is worse again today, nothing is helping, but they can't/won't give me anything other than paracetamol, so I guess it's time to suck it up for a few months .

I'm sorry. D: I hope you hear back from them soon.

My GIs (current one and in the past) would never prescribe pain meds and neither does my Rheumy. My GP will prescribe Tylenol 3 but if I needed anything stronger then I'd have to go to pain management for it. Do they have pain management in the UK?

Normally my GP will prescribe pain meds, I think this time she just doesn't know what to give since normally they would give NSAIDs until you see the rheumatologist and then they would prescribe something else.

We do have pain management, but they aren't very keen to refer there until they have exhausted other options, in the past I have had Doctors which have been very happy to just leave me things that cover up the symptoms and I think my current doctors are afraid of that happening again.. Like if I go to the rheumatologist with the pain well controlled they might not see the full extent of the condition.

Here pain management specialists seem to be more for people who are in chronic pain that can't be treated or for palliative care. So it might be an option if the rheumatologist draws a blank and they can't suggest anything.

Thankyou so much for all of your support on this . This site is amazing !

I saw on your profile that you have been on steroids in the past, but stopped them in Feb and May. I am assuming that this was for the Crohns? I am wondering (BIG TIME!), if your joint pain was relieved when you were on them? (I am only asking because I have a mixed connective tissue disease, and prednisone is commonly used.) I hope that the letter your doctor is writing helps you get in to see the rheumatologist.) I can't believe that they are letting you suffer like this!

fozheart said:

I saw on your profile that you have been on steroids in the past, but stopped them in Feb and May. I am assuming that this was for the Crohns? I am wondering (BIG TIME!), if your joint pain was relieved when you were on them? (I am only asking because I have a mixed connective tissue disease, and prednisone is commonly used.) I hope that the letter your doctor is writing helps you get in to see the rheumatologist.) I can't believe that they are letting you suffer like this!

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Yes my shoulders and hips especially seemed to do better on the prednisilone, it seemed to get a bit worse again once I was just on the entocort.

This is the problem with the NHS... The waiting times are a nightmare and in the meantime people are supposed to just get on with it. They sometimes seem to forget that this is our lives... I'm not allowed to even look for work until this is sorted, and I want to go back to uni, I have to apply by January but there won't be a point if I don't hear back by then. . Ahhh!

Thankyou for your support!

A little update... No word from rheumatology... Still signed off work.

The pain in my hips is getting progressivly worse, walking is becoming very hard and it had me in tears yesterday (and I hardly ever cry) , so I gave up and I've just left a message with the IBD nurse, hoping they will have a way to help me with my mobility while I wait for the consultants to pull their fingers out and do something useful.

I am so sorry for you, but also a bit baffled. I know your country's health system is run differently, and I know that rheumatologists are hard to come by, BUT... you are a YOUNG, smart, spunky girl, with a potentially great future! (which is on hold!) I would think that the doctors that you do see, would try to move mountains for you to be seen! Sure, most specialists have waiting lists, but they usually have certain slots/times for people who are suffering terribly and need attention now!

If I were you, or your mom, I would first of all, want confirmation that your doctor did send that letter- that was almost a month ago! And yikes..... I WOULD probably go ahead and call the GI's doctor's secretary too, whether she had a tone or not! Does your GP know that you are continuing to go downhill?

I am sorry, valleysangel- I am just discouraged for you! I want you to get the treatment you need to enable you to get out in the world and do your thing! I am sending you best wishes and lots of prayers!

Thankyou fozheart! I agree, this health system is both amazing and terrible at the same time... The saddest bit is that I was actually training to be a nurse before all this kicked off, and would so love to get back to that, but the longer I wait the less of a chance that can happen.

My GP does know that things are still getting worse.. But she says that she can't do much more and it's up to the hospital, unfortunately, the hospital consultants here don't really seem to pay much due to what the GPs say, even if a patient is struggling.

If they would listen I'd have my dad or my uncle call, my uncle is in charge of a huge team which is part of care in the community and occupational health, he tells consultants how to do their jobs... But as soon as you hit 16 they refuse to listen to anyone except you unless your unable to talk.

I'll see what the IBD nurse says when she calls back, my next step is the GIs Secretary if nothing happens, if I knew what rheumatologist I was going to be under I'd be calling them.

Oh and I was due for endocrinology last month too.. And guess what.. No appointment.. Gahh.

Thankyou so much for your support and prayers, it means so much!

No word from the IBD nurse yet valleysangel92? I'm sorry that the pain is getting worse. *HUGS*

I was just about to update, didn't get a chance yesterday as things were a little crazy at home.

She called me and said that it's not her area and she can't do much, keep taking the paracetamol.. She said that I can have something stronger from the GP but when I said that my GP doesn't seem to want to give me anything else she said she'll speak to my surgeon (because he was my last point of contact) and see what he can suggest.

She also told me to phone the booking centre, which I did yesterday, and they told me that it's going to be at least the end of January / start of February.

Thankyou so much for your support .

Just a little update.. I'm sort of using this to keep a track for myself as well as anything else..
The IBD nurse never called back with any advice from anyone, so that was useless.

I'm still having a lot of problems with joint issues, my knees have been particularly bad the last few weeks, very sore, stiff and puffy, definitely something not right. Just hope that I don't end up having a sudden reprieve when it's time to see the rheumy. At the moment just getting by with heat packs and what pain killers I can manage to get otc.

Still not able to work or really do much of anything, which is some what frustrating, but I know there are others dealing with much worse. Thankyou everyone for all of your support.

Can you call the IBD nurse back and bug her about it? She may have forgotten. Any chance you can talk to your GI rather than the nurse?

Keep taking photos of any visible swelling in case its all better by the time you can be seen. I'm sorry you're still in pain.

:hug:

The first time I phoned she said it's not really her area so she said she'd see what she could find out but couldn't really do much.. I can call the GIs Secretary but he works at 3 different hospitals, so tracking him personally isn't so easy, generally patients can only speak to them over the phone in emergencies. Other wise you have to wait until you see them. (kind of silly I know)
I'll be having to see someone or phone the IBD nurse again soon anyway, because the crohns seems to be flaring again.

Thankyou

Wait... GI at the end of January? Has your GP heard back from the rheumy, with that appointment yet?

The rheumy is supposed to be the end of January/beginning of February, but that's not a solid appointment yet, it's just what the people in the booking centre have been able to tell me. The GP did send a letter trying to speed things up, but it doesn't seem to have made much of a difference.

Although I'm not actually due to see my GI until around February (I saw him last in August) I'm trying to get in soon due to current crohns symptoms.

I hope you can at least get in sooner to see your GI. Its a very real possibility that your joint pain is connected to a Crohn's flare. The first thing my Rheumy did was try to treat my Crohn's because he felt it was the main cause and he was right. My extreme joint pain was my first symptom to my current flare. Now that its just about under control (wont know for sure until I'm off the Entocort), my joint pain is mostly gone and when I do have pain its nowhere near as bad.

Thank you for keeping us posted.

It looks like I should be hearing from my IBD team sometime soon, I went to the doctors yesterday (Thursday) and they called the nurse asking for advice, have a 10 day pred course.. Then when I got home my GP called and said the hospital had called him back and my consultant had requested some bloods (which I had today) and they were sending me a stool sample form ready for a clinic appointment. Fingers crossed!

Yay! I'm happy for you! :hug:

Thankyou don't think I've ever actually been so happy to have bloods taken as I was today . I'm easily pleased haha.

Ahh... a sigh of relief for you, and hoping that they will get results quick and make a decision! Wouldn't it be something if you were feeling better for the holiday?! At least enough to get out a bit and have a little fun! I am wondering how much prednisone they put you on this time, and if it is making a difference? Hope so.

Thankyou I am hoping so too.. I'm on 6 x 5 mg for 10 days, then taper one a day, so ends up 15 days in total... At the moment they are basically just keeping me up all night, I was having d but they seem to have settled that, and my joints do seem to be at least a bit better, they aren't so painful and swollen, so a positive sign I think .

Ok, so I just got 2 letters in the post... One saying they are cancelling an appointment on the 30 th of December, the other saying I have an appointment on the 13th of January.... This is for my GI.. I'm not very impressed tbh....

Sometimes emergencies can push back appointments. I'm sorry you have a longer wait now though. :hug:

The letters were both dated the same day , but I've not had the original letter telling me about the appointment on the 30 th, so I think they must all of been sent at the same time and those two got here first (our postal system doesn't make sense) I don't mind that the one on the 30 th got cancelled, I wouldn't of been able to make it anyway ( I'm being taken away for New years) it just gets a little puzzling when you get the cancellation letter and the rebook but not the original appointment . Generally around that time you would see the consultants registra not the consultant themselves, so this at least gives me a better chance of seeing my GI personally ( he doesn't like his patients Palmed off on others when they are struggling).

I thought it might be about time I updated this. GI appointment got me no where, and he says he doesn't know what to suggest other than to wait for rheumatology.

I haven't yet heard anything from rheumatology, and my uncle (an occupational therapist incharge of a huge team of medics) says I'll be lucky to get one within 6 months of my referral time, so that would mean id be lucky to get one by March.. Could be up to April or even may if past experience is anything to go by

As far as the joint pain goes, it temporarily eased a little after a course of steroids but now it is very much making its presence felt, my shoulders, back, hips and knees are especially painful, and it is disrupting my sleep, management wise I have a small amount of cocodamol to use when things are very bad, but getting that was like getting blood out of a stone. So I'm having as many hot baths as I can and I'm using heat pads and wheat packs as if they are going out of fashion.

When I saw my Rheumatologist he did do some tests to check for RA and AS but his main goal was to get my Crohn's under control. I didn't have a lot of symptoms at the time but when I was started on Humira, all of my symptoms went away (wish I could have stayed on it). Once my GI realized what was going on he got more involved. Did your GI felt that it was possible that your joint pain could be related to Crohn's?

My GI didn't even seem to be sure that I have crohns "/ . I don't know why, but apparently there's some doubt, even though I've been told previously it was definitely crohns.. So I don't know how it will be approached now.. I know that after my surgery, a sample of the removed tissue was sent away for pathology and a leading professor in ibd said they recognised signs of crohns and also of damage from anti-inflammatorys which were used to treat joint pain I had as a teenager. So my GI stumped me.

Before that, it was always stated as a possiblity that the joint pain was more than likely related to the crohns in some way , even if they flared independently of each other.

Everyone's symptoms are different and I've seen some members mentioning joint pain as a precursor to a flare. Some mention flu like symptoms, others say fatigue and the list goes on. Have you had any tests done recently to check for active inflammation in your intestines (sorry I can't remember)?

I had some blood tests done and a stool sample... But this was after a course of pred. So results could of been affected... it was my GI that ordered these, but he didn't seem to remember that.. To be honest I've always had problems with my shoulders, from the age of at least 12 I've been going to the doctors about it.. But the whole body thing has been maybe the last 1-1 1/2 years.. so it coincides with when things got worse crohns wise.. It seems that my inflammation levels were okay , or at least not bad enough for him to mention (but then, I've had them not mention fluid around my lungs or cysts on my kidneys before, so who knows what that means) my vit. D was 'slightly' low though and so was my iron. I've never had low vit D before. And last time they found inflammation it was on the scans, it didn't seem to show on the bloods (or if it did they never told me) .

Could you try to get copies of your test results? Some doctors can be forgetful or flaky even yet usually just have so many patients that it gets hard to keep track of things so they will deal with emergencies usually but if it's not an emergency then it might get brushed aside.

I think I can call and ask to be told them, if my GP has them, if not you have to pay to have them sent to you. I think he must of been dealing with some sort of emergency or something because he was an hour behind and he was quite out of character for him.. I will be needing to see my GP soon anyway since I need to see if I was given the correct vitamin D supplements ( the ones I was given have 500mg calcium in them and normally im told to stay well away from calcium supplements) . Thankyou for your input!

Do you mind me asking what sort of testing your rheumy did?

He did blood work testing for Rheumatoid factor (RF) and Anti-CCP. He also did the blood test HLA-B27 for ankylosing spondylitis along with general blood work that tests for inflammation like ESR and CRP. X-Rays and MRIs were also done on the areas that hurt the most (hips, lower, mid, upper spine and neck). Other than that he made me stand, sit and bend various joints certain ways, checked my flexibility and strength and had me walk for him as well.

Thankyou Jennifer .

I would think that you would have an ANA blood test too, and muscle enzymes. When you were younger and had the joint pain, did they rule out Juvenile Arthritis? I wish they would get you into that rheumatologist!

Thankyou fozheart. I'm not sure that juvenile Arthritis was ever mentioned to me, so I dont think it even occurred to my doctor at the time to look for it. The GP practice I was under at the time was a bit hit and miss, it took 6 months of going back and fore to just get a shoulder xray, which came back with a 'minor abnormality'. The hospital had advised my GP that we should get my other shoulder xrayed and go from there, my GP refused it and said we would simply 'let nature take its course' . I eventually got in with a locum who ordered bloods including iron, and realised I had all the markers for coeliac so that became the main focus. I had physiotherapy on my shoulders 2 years after originally having problems, and they told me there had been substantial muscle wastage, and that it would probably never go back to how it was originally. I still to this day don't know what the abnormality was.

Hopefully you will get some answers and treatment soon...

Thankyou, sometimes I think i might go crazy if it wasnt for the support of my family and this place .

I finally have an appointment with rheumatology . The 20 th of feb, which is still a fair wait considering I was referred early September, but at least I know when it will be now.

That's awesome that you finally have an appointment! I hope it goes well.

Hi!... looking at the date, and wondering if you finally saw the rheumatologist!?

Hey! Yes I have I started another thread and forgot to update this at the same time

I saw the rheumy on Thursday and he was one of the best doctors that I have ever met, he knew my history very well, he set my gastro straight too, saying he was wrong to tell me I didn't have crohns, I do and I shouldn't ever be told I don't, and he immediately changed my vit. D supplements from calichew (which have very large amounts of calcium and only 0.10 micrograms of vit D) to fultium with 0.20 micrograms which I take 4x daily. He was very unhappy that I'd been given calcium supplements and was glad I'd taken the decision not to use them.

I had some bloods drawn, and he wants me to have an isotope scan, which uses small amounts of radioactive material to detect inflammation in the body, it is highly sensitive and works even with tiny amounts of inflammation.

If nothing shows after the scan and I still have pain, they will diagnose me with chronic pain so that I can start having proper pain management.

:dusty: Hallelujah- finally you are getting the care you deserve, and hopefully some answers!

Thankyou for your support you guys have been awesome

Hopefully the test will show what's wrong (would be awesome to know the cause of the pain so that can be properly treated rather than just helping the pain). Did they mention anymore testing in case the test shows nothing or will you just be sent over to pain management (I understand help with the pain for now but I'm hoping that you can be rid of it or at least lesson it some day)? When are you having the scan done?

Well they said the scan is very sensitive, so it should pick up everything, I've had xrays before that haven't been very useful, and they didn't think a CT scan would be either. I'm not sure about an MRI but we have very long waiting lists for those and they would need a full body one so I don't know how keen they would be to do that.
I don't have an appointment for the scan yet, waiting lists are different for each hospital and I could be sent to one out of 4 or 5 , so hopefully they'll be sending me to one with a shorter list (which should be common sense, but not around here) . I'm hoping I'll have the appointment through in the next week or so.

Just to let you guys know, I found out today that my scan will be on the 4th of April

I had this scan last year, a bone scintigraphy, and it revealed inflammation in my joints. All other tests including ultra-sound, MRI, x-ray and blood test came back negative, because my level of inflammation activity is low. The bone scintigraphy is the best test, as you mention, the most sensitive. I had a bad rheumy who kept telling me :'' you dont have inflammation, you dont have arthritis''. That same rhuemy sent me to a hand surgeon to get operated!!! Thank God, it is this surgeon with lots of experience who sent me for a bone scan scintigraphy because he suspected my problem was arthritis and not another condition requiring a surgery as proposed by the bad rheumy. The test came back positive. I have changed rheumy right after and now trying different treatments with a new rheumy. I say if you have swelling this means there is evidence of inflammation. Chronic pain syndrome or arthralgias do not have swelling, but the scan will give you the right answer.
Im glad you are finally in good hands.

I'm glad to hear the scan found the problem for you and that your surgeon didn't just rush in with an operation.

My scan is on Friday, so hopefully it won't be much longer before I know what's happening.

yeah me too, I had met a first surgeon who was ready to operate me and rush just like the rheumy. Both of them had careless personality with fake smiles, you know, that kind of people... they didnt know much it appears and I know now not all doctors are good, its a chance I went for a second opinion. I got that from my mother when I was a child :''whenever a doctor propose an operation, always seek a second opinion''
let us know of your resuts.
are you doing a complete body scan?

Oh yeah I know exactly the type you are talking about.. doctors like that always make me think I should ask someone else.. There's just something about them...
I have 2 appointment slots for the same day, 15 mins apart, one is a dynamic bone scan, the other is a whole body bone scan, both have the same set up, you go and have the injection and then they do a quick scan and send you away to go back later (it says 3-4 hours later, I'm hoping it's 3 maximum, I'll have to wait in the city the whole time) but the whole body asks you to drink 2 pints of fluids inbetween (you don't have to hold it) .

ok thats exclatly the same test I have done, but I got tested only for upper body since only my hands n wrists were problematic. Inflammation was also seen in elbows and in shoulders, but at a lesser degree. That was surprising because I have never felt any pain in both of these joints. this only proves how sensitive this scan is, its even more sensitive than us :lol:

Hi Valleysangel,

Two more days for you...yay! You have waited FOREVER, especially for the rheumatologist. I am praying that these 2 scans can pinpoint the wicked pain that you have had for so long! I am wondering how your joints are feeling right now-, not that I want you to be hurting, but maybe that would make things show up better. I am also curious to know when your follow up with the the rheumatologist will be- don't know if you ever got the results from your blood tests.

Here is hoping to a brighter future for you! :ghug: :wine:

Thankyou Fozheart

This appointment seems to have taken forever to come, I think its partly because I've known the date for about a month or so, which always makes it feel like its forever away but yes its finally here! I've actually had a badish week with my joints this week, on Sunday, my neck seized up, and then my shoulder threw a tantrum and then totally locked on Monday, I couldn't move it more than a centimetere without shooting pains into my back, its still achy and irritated today. I've also had a lot of random pains in my hands, hips, knees and ankles that come and go spontaneously and make the joint practically immobile for a time.. So here's hoping they'll give the radiographers a nice little show tomorrow!

I have no idea when my follow up will be, if i have one. I was told that if the scans and bloods don't show anything then they probably won't contact me since they don't think there'd be anything more they could do. Hopefully, if there is something (which I kind of hope there is, how strange to want a test to come back with something, what a weird world we're all in huh?) then they would contact me within 2-3 weeks, but I'm not holding my breath, it took them 2 months to contact me after my MRI. Unfortunately, the rheumatologist has bigger waiting lists than the gastro, so it could be a couple of months.

Thankyou for your continued support .

So, I had the scan Friday, and it seemed to go well.

At first, I was worried that they would refuse to scan me, since I couldn't tell them when my last period was (I take a mini pill and my periods are very erratic, I often don't get them for months at a time). I told them I'm not sexually active, but they still pressed me, and tried to get me to do a pregnancy test, which I couldn't do since I'd only just used the bathroom before I got there, so they made me sign a disclaimer that they wrote to say I wasn't pregnant or sexually active.

I only had to leave for 2 and a half hours, so it wasn't that bad a wait, and the people doing the scan were lovely. I had the skull to toe scan first, and then the close up of my feet and hands, while the close ups were taking place I was chatting away to the radiographers, and one of them started asking about my xray exposure, saying that next time I go to A+E I should try and persuade them to use ultrasound or MRI .

When they got to my hands, he let me see the pictures on the screen, the radiation showed up as lots of little red dots, in some places there was just one or two, and in others, like my wrists, there were big clusters which almost totally covered the bones. The radiographer did tell me that the pictures on the screen weren't the finished result yet as they have to take out all the background radiation and factor in the amount of bones that connect your wrists to your hands, but he did indicate that there seemed to be more activity in my wrists than what was normal.

The results take about a week to get back to the referring rheumatologist, so they've said to leave it for 3 weeks and if I haven't heard anything, to go to the GP and ask them to chase things up for me, since they will have more clout than me calling up myself.

Its true that ultrasound or MRI could be done first, but these tests are not as sensitive as the bone scintigraphy. In my case they were done without results, everything came out normal. Do you have obvious swelling? If there was no obvious swelling at eye look or touch exam for the rheumy, then the bone scintigraphy was definately the test of choice to avoid a further waist of time doing other tests, I reassure with that! I wish I have had a proactive rheumy who sent me to bone scan right away after ultrasound instead of telling me I had no arthritis and worst sending me to surgery!!!

I find it quite surprising that a technician would comment on your results or choice of test... In Canada, they could never do that. lets see what the nuclear doctor (the doctor who analyses the bone scintigraphy) says and he or she will compare the captation with other joints in your body. You should be able to get your results in a week at the medical archive department of the hospital. It could allow you to be more ready before your rheumy appointement. (Thats what I did, any test including blood tests are accessible to patients whenever the results are in, well here in Canada.)

Sorry, maybe I wasn't clear enough? The radiographer was talking about if i landed in A+E, for example for the crohns, since they always jump to an xray, his concern was that if there is some form of arthritis, I could well need more of these tests in the future, and so it would be wise for other doctors to take into consideration the amount of xrays I'm getting, since I started having them at 12, and have them for multiple reasons. He wasn't questioning my judgement or my rheumatologist, just the A+Es quickness to go to xray and CT all the time for stomach issues in a young girl who might want kids etc. I did not feel he was questioning me and he said himself I'm under a very good rhuematology team. No disrespect was meant.

As for test results, he was simply explaining what the excess radiation could mean, not what they definitely mean. He was very clear that when they strip it back they may find that there actually isn't anything excessive, I have some medical training myself, and was curious about the images, that's all it was. I don't feel that he over stepped the mark, as he was very clear and did say more than once that this was not the finished result. Generally, radiographers are not allowed to give results, but if a patient asks a specific question, they are allowed to answer, provided they state that they are not a doctor and the results need analyzing.

At my hospital, they will not give the results of tests to patients over the phone unless the patient is speaking directly to the referring consultant. Phone numbers for things like the archive department are not freely available, and unfortunately, neither are consultants office numbers. So the quickest way to get test results is to go see your doctor. This is partly because of the number of people who seem to think that DR Google is better than their doctor, and go and Google their results, thus working themselves into a frenzy and then refusing to listen to said doctors diagnosis/treatment plan.

Edit - oh and yes i do have obvious swelling, well its obvious to me and my family at least.

Oh ok, I understand all your explanation, thank you for clarifying. I understand the concern about multiple exposures. I dont know where bone scintigraphy stands in terms of quantity of radiation, all I know is that CT scans are really the most ''radioactive''. Ive become pretty passionnate about health and nutrition and when I go into a situation that is going to produce lots of free radicals in my body, such a X-rays or whenever I 'll be able to make some sports, I make sure to eat a lot of food really high with antioxydants, such as Goji berries or watercress. Its been proven that these food eaten prior to doing a physical activity will greatly limit the free radical formation in our body (As seen in the Food Hospital tv show from the UK). I'm extrapolating this idea to X-ray exposure and propose to eat antioxydant rich food prior to such radiology exam to limit the amount of damage caused by free radicals.... something to think about for future exam if there are...

tests results are not available over the phone for us either. We must go in person or write a letter to the archive department and sign papers to have access to the results. Very few people are aware of this possibility.With a few bad experiences, I prefer to take some extra steps now and be more prepared in order to discuss my case and treatment options, but thats very personal.

My goodness, ValleysAngel92, it sounds like you have gotten quite a run-around. I hope you get a diagnosis and relief soon.

I clicked your message link because I have had Crohn's-related R.A. for years, and have only recently been diagnosed with osteoarthritis in my knee. The latter seems to be pretty much unrelated to Crohns. The rheumatologist described it to me as a "wear-and-tear" issue, and one that is especially common with aging. It absolutely showed up in a simple X-ray, because my knee joints are bone-on-bone (little to no cartilage left in my knee joint). Even I could see it. Ouch!

Since I have both forms of arthritis, I can feel the difference, although both cause pain.

R.A. comes and goes in most all my joints. It flares with my Crohns, but also seems to have no trouble flaring up on its own. It is really sensitive to weather, especially when the barometric pressure changes and/or the temperature fluctuates a lot within a 24-hour period. That means spring and fall are bad times of year for me. There are good days and bad days. Or in some cases, bad days and worse days.

Osteoarthritis, for me at least, is more of a constant pain. It doesn't seem to be dependent on my Crohns or on the weather. They are all bad days. My knee is always swollen and stiff, and it's hard to walk. I recently had the fluid drained from my knee, and got a steroid shot. Four days later, it felt better than it had felt in years. I can walk again without limping or dragging my leg like Quasimodo.

I have a relatively new (and wonderful) young gastroenterologist who was the first doctor I've had who really took my joint pain seriously. Before that the doctors I had would say, "Well, if we get your Crohns under control that should help with the joint pain." My new doctor sent me to a rheumatologist who has made a world of difference to me. And guess what? My gastroenterologist and rheumatologist actually talk to each other to decide the best course of treatment.

Right now I'm on Remicade which helps with the joint pain, and I also take two oral pain killers as needed (Tramadol and Celebrex). And I can't tell you how much difference the steroid shot to the knee has made. I know it's only a temporary fix, but at this point having even a few pain-free months is a gift.

I hope you get that kind of relief, too, soon ValleysAngel92.

Hi Nicole! I am glad the test is over-hoping you get a call soon!

Kiltubrid, I am glad that you have two good doctors that communicate with each other! I am curious though, regarding your celebrex. You take that as needed? I thought that it was something that is supposed to be taken on a regular basis.? Regardless, that is wonderful that you have a break from the pain!

I took Celebrex as needed a few years ago. Right now I take two a day, 12 hours apart. The Tramadol I take as needed, up to 3 a day. I usually take at least 2.

Hey all.. just a bit of an update

I'm still getting a fair amount of joint pain, my hands are especially bad lately, so I've not been as active here as I would like sometimes. My feet look like I've pumped them up with a football pump, and my back and hips seem to have developed a split personality, they can go from no pain at all to 7/8 out of 10 in no time at all.

So far, I've not heard anything about the scan, and it has been just over a month now. I called my GP practice today, and they have said they don't have anything through from them yet, they only have the results of some bloods I had the other week (which were messed up and I've got to have again). So at the moment, I am in limbo, I don't have a way to contact the rheumy at the hospital, since the switchboard wont put you through to a specific consultants office, just to the general department, and that never really helps. My GIs always have to give me their direct extension themselves, or I call the IBD nurse.

I was starting to think that maybe the scan didn't show anything, so that's why I'd not heard and it was time to call the GP, but since they haven't either, I'm going to assume that the hospital is just taking its merry time and there still might be something on the scan. After all, I assumed my MRI was clear, then 2 months later I got told they suspected crohns.. so who knows. To be fair, this isn't always the consultants fault, I've had letters before with the date it was written being a full 2 weeks before the postal mark date. I even had some colonoscopy prep go missing and not turn up when I was being diagnosed, and cancellation letters appear without an original appointment letter.

I'm really hoping this gets sorted out soon, I really need to be on a stable treatment plan before I start university if its at all possible, I love the NHS, but sometimes I wish it wasn't quite so slow.

I would not have the patience that you have! Could you possibly persuade your GP to call the rheumatologist or even pop a letter in the mail? It seems like the norm for you to fall through the cracks, but I realize that they are busy doctors. This is different though, if you have the chance to start university! Maybe if they knew that, they would speed things along? Whether or not the scan shows anything, it is still the rheumatologist's responsibility to keep looking. There are so many different conditions, and it may take some time to get a correct diagnosis. Maybe they will pinpoint yours, but it could also be an undifferentiated connective tissue disease, or mixed. There is no need for you to be in pain for so long-you have a right to be out of your misery! (sorry..just my opinion....)

I guess we just get used to this here, to be honest, in general terms a month isn't that much here, its just that I was told 2-3 weeks. I guess my main concern at the moment is that I'll be starting university just before the weather turns colder, and last autumn/winter I ended up hobbling round on crutches, which is manageable in lectures, but I'll have clinical skills days all through my first term, and my second term I'll be out on placement in hospital.

My doctors are aware that I want to go back to university.. in fact, my surgery was rushed through last year because I was supposed to go back last september, but hadn't recovered enough from surgery when I went to the health assessment , and subsequently failed it. Last year I'd had a place held for me because I'd had to drop out the year before, when I found out I couldn't go back, my lecturer and I agreed that it would be best for me to reapply when I felt ready.

I didn't bother reapplying for this year, because when the applications came out I was struggling to walk and on the brink of a flare. However, a couple of months ago I got an unexpected phone call, asking me to confirm my place, I checked it out, and low and behold, I'd been given another place, no application needed. At the time, it looked positive that I'd be on the road to a treatment plan, and accepted, and now I'm determined that I'll be as well as I can be.

The last time I told one of my GPs that I want to go back to work (to save for uni, this was 2 months ago) 'relax, take it easy, you have the rest of your life to work ' and promptly signed me off as unfit. They seem to want to wait for rheumatology to make their minds up before they let me look for a job, which is fine and all, but I don't have all year..

Anyway.. I'm rambling now.. The only way I'll be able to get my GP to see them is to go and see my GP, which I'll maybe be able to do next week, I've currently got other hospital appointments and blood tests etc coming out of my ears. At the moment though, I'm loosing faith in most of the doctors at my GP practice, out of 11 doctors, there are only 4 I'm comfortable with any more. The rest either try and prescribe stuff thats dangerous for crohns, don't listen to a word I say, tell me to wait for the hospital or tell me I'm a headcase/just after more meds (my script is already 2 pages, how much more can anyone want?). So my being 'fussy' over which doctor I'll see will make it a little longer than normal, but I'd rather wait and have good care . When I can get in with someone I'll let you know what happens. I think a phone call would be the best thing, letters seem to just be put in the file and only read during appointments...

I have never been 'typical' for anything, even my orthodontist wants to use me as a case study because he thinks I'm an 'interesting' case. So it wouldn't suprise me if they can't pin point exactly whats going on, but it would be nice if they could at least say 'yes, theres definitly inflammation' or 'its not x y or z but it could be a mix of v and t .

The only other thing I can think to do is try and see if I can get the rheumy number from my uncle to at least ask them if they plan on seeing me again. If they say they don't, I'll know they think its fibromyalgia (sp?).

Okay.. that turned into a bit of an essay... oops

So I went and saw a GP today, I got fed up of waiting so I took pot luck and actually ended up with a very sympathetic doctor who really understood where I was coming from.

Although there was no letter from my rheumy about my results, there was a report on the hospital system about my scans, which were normal.

I've now been diagnosed with fibromyalgia and was given some information to read and some amitriptyline to try if I want to. If not I can try non-medicine treatments, she was happy that I understood the condition and my body well enough to work out what I think is going to work for me and what I feel comfortable with.

She is happy for me to go back to work/university if I feel I'm well enough, which means I can come off sick pay and go and look for a temporary job . She says she think's i'll be a very good nurse. She was a little exasperated that the rheumy hadn't written to say that there was nothing on the scans, but said that in his origional letter to them he'd said he thought fibro was more likely anyway as I'd been tender in 14 out of 18 of the trigger spots.

Although it's still a chronic condition and can be debilitating at times, it is at least something that has a few varied treatment options, and something that wont do permanent damage to my joints or my bones and hopefully won't disrupt my future too much.

Thankyou so much to all of you for all of your help and support through all this, you've all been amazing .

Hi ValleyAngel,

take a look at this recent April 2014 research article published in a rheumatology journal :

''Fibromyalgia and non-celiac gluten sensitivity: a description with remission of fibromyalgia.''

http://www.ncbi.nlm.nih.gov/pubmed/24728027

In the full version of the article, it is mentionned that 8 of 20 patient also stopped milk products along with gluten. remission was acheived in between 5 and 31 months.

All the best to you.