Joint/muscle pain advice please?

joint/muscle pain advice please?

Hello all, I've been away for ages for lots of reasons, but I'd be ever so grateful for your advice.

I have RA as well as chrohns. Not a great combination, but not that unusual from what I understand.

I'm really, really struggling to get the joint pain under control - the gut issues aren't great, but I can deal with them iykwim? As long as I take my entocort etc, I need to dive to the loo as soon as I wake up (quite often that's WHY I wake up), and then I need to 'go' a few more times, but that's it. It's not that urgent apart from first thing, but the pain elsewhere is driving me bats.

I can't take anti-inflammatories - they work short term, but then aggravate my CD, which in turn increases joint pain...you get the picture. I'm OK with a dose or two occasionally, but I really can't rely on them.

I'm at the point where I feel a bit desperate. My shoulders, elbows, wrists, hips, knees are incredibly painful - codeine takes the edge off (and it slows my gut down), but doesn't really deal with it. I've spent much of today in tears, which isn't like me.

I'm exhausted - trying to be 'normal' all the time is just taking it out of me, but I don't know what else to do?

Any ideas for pain relief from those of you in the same position? All thoughts gratefully received!

The Finchley Clinic in London has an alternative treatment available using a Rife type frequency machine that can help with arthritis.

They are not allowed to make health claims since it is not an approved device, but since I have two of these I know that they can work for several conditions. Since you are out of other options, it may be worth a try. I use ours to treat Lyme disease, and resolved my H-Pylori infection using the same method.

I do not know if this is close to you or not, but maybe they know of one closer to you if it is too far.

From the reports I know of it takes a few weeks to work, but it appears to work quite well. No known side effects.

The device they use is one of the best around.

Dan

what meds are you on sparky?

there are crohns meds that also help with arthritus, i'm on methotrexate and that seems to help a great deal.

They are going to put me on Humira which specifically targets the protein which attacks the joints in both Crohn's and RA.

Hey Sparky, I'm pretty much at the same stage as you.

Are you seeing a physiotherapist?

was wondering the same- what meds are you on?
there are meds that are approved for crohns that also show signs for helping ra, and there are meds approved for ra that also show signs of helping crohns.

since you have both conditions, then you get the full spectrum of meds to try!
( i know it sucks.....but at least theres that one tiny positve point)

Hey Sparky,

I am in the same position as you.

Cant take the anti inflammatories because of crohns, cant take tramadol for long as it impacts on my gut and slows it down.

I take paracetamol 4 times a day. I am on methotrexate with rheumatology and they liase with my gastro consultant so both sets of meds tie in.

There is sulfasalazine which can also be used for both crohns and RA. I cant take it because mesalazine for my crohns triggered my asthma LOL

Have a think also about what the type of pain is too...

I have the methotrexate for joints pain.. I also am on gabapentin for nerve or neuropathic pain which causes "electric shocks" to shoot down my arms from my shoulders and also the length of my feet. Rheums tell me this is due to nerve damage from inflammation in the the joints in my feet and shoulders.

The gabapentin helps a bit and it also helps me to sleep too as the pain can have me in tears regularly along with the stiffness. Find it difficult to turn over in bed at night because of the shoulder pain and lower back pain and stiffness too.

Methotrexate like some of the crohns meds can also impact on the liver which happened to me (have fortnightly blood tests).

They have also given me slow release steroids as an injection into my hip/bum cheek. The effect lasts for 2-3 wks (apparently should last at least 4) for me. I had an injection friday week ago and it has certainly helped me to cope again whilst we are waiting for methotrexate to do its thing.

Have you tried remi (here we call it infliximab and I am on it for my crohns every 6wks and still have rhuems problems despite it)? Rheums use it at 3mg/kg and Gastro use it at 5mg/kg. Rheums also use enebrel and rituximab on the biologics front with good results they have told me.

If the metho doesnt work for me or impacts on my liver again they are going to try one of 2 other drugs which I will post about when I know what they are!

Will try and help where I can. Just ask ok? Hope you get some relief soon. ((hugs))

Thanks for your replies - had a seriously rubbish week hence disappearing again.

I'm currently taking Entocort, plus paracetamol+codeine 4 times a day. That's it - didn't get on with sulfasalazine/mesalazine/methotrexate. I *should* be taking aziothiaprine, but I stopped it a wee while ago because I felt like it was making things worse - I guess I should have talked to the specialist first?

I've had steroid shots into particularly inflamed joints - works short term, and definitely gave me some relief - but this is different? It's not hugely acute in one place, it's horribly painful in several. Not tried Gabapentin, I'll look into it.

I hate this, I really do. I also hate that every time my 10 year old boy has a tummy ache I freeze. I live in fear of him inheriting this - I can't tell you what that particular anxiety does to me. Fingers crossed, it won't happen.

Thanks again xx

once again, sorry for posting and running - feel like I'm very much a taker on this forum, but it's just because of the way things have been - I'd very much like to be more involved if I can.

Since I was last here (2 months), things have got steadily worse, culminating in a weekend around a month ago where I didn't honestly care whether I lived or died, I just wanted the gut pain to go away (I know I sound like a proper drama queen, but that's how I felt at the time).

Following an emergency appt with my GP (god bless the NHS!), I started back on pred for the first time in 3 years, and after 5 days started to feel as if I might actually survive.

Symptoms have settled right down, other than being absolutely exhausted (what a bummer that was - I was almost looking forward to a good old dose of Pred Mania!).

Seeing the consultant on the 15th, soonest I could get to see him even going privately. He's a good guy, and very open to hearing any ideas/thoughts I might have.

I'm starting to slow down the pred, as I'd like to be taking as little as poss when I see him so he gets a realistic picture. I've got the blood test results from the emergency appt, and they show that my CRP/ESR were pretty high, which I expected.

Any ideas I can take with me? I've been on Azathioprine before, but iirc, it took aeons to work - something in the region of 6 months. I don't really want 6 months of feeling dreadful, is there anything newer/more effective?

Whatever he gives me is going to have to work with my RA too. And hopefully give me some energy.

I don't want much do I!

Hey Sparky,

Sorry you are back feeling so rough.

I am on Methotrexate for my arthritis and they hope it impacts on my gut too. I have also been on remicade (infliximab here in the UK) for the past 2+yrs.

Both can take a bit of time to work. With the remi some folk feel so much better after the first infusion whereas others like me took 3/4 infusions to feel any results.

Keep in mind that pred can cause muscle pains and general aches etc on top of your arthritis as you decrease it - side effect.

My main thought would be for you to look at Elemental 028 Extra and drink it if you can. I felt the best I ever have whilst on it. It means you get all the nutrition you need and the most of your gut gets a rest. There is research showing elemental reduces inflammation but they are unsure how it does it.

I keep the stuff at home for when I dont feel great. Takes approx 5-7 days to settle onto it properly and can be tough going but for many crohns sufferers they will cope with anything to feel better.

Hope you get some relief soon. Keep us posted and dont disappear over the horizon for so long next time eh? ((hugs))

If you don't want to wait for the Azothiprine to work, you could always bump up to something heavier like 6MP. The side effects are really unbearable for a lot of people though.

Hey Soupdragon, thanks for the information about Elemental 028 - I'll look into it before I see the consultant. I'll do a bit of googling around infliximab too - just want to have some ideas as to what's what before I go and see him. I'd be more than happy to give something like elemental a try, anything that made me feel a bit more like myself is worth a shot. Withdrawing the pred doesn't seem to have any side effects so far apart from making me tired and a headache that won't go away.

Had a pants day yesterday, just completely knackered (and raging PMT which is never good - I cry at the drop of a hat at the best of times, my DH was treading extremely cautiously round me last night as I burst into tears because of the way he looked at me :b ). Feel OK this morning though, apart from waking up at 5.30 and not being able to get back to sleep, grrrrr.

My aim for the day is to make a little effort round this board rather than being all me me me. I always enjoy posting here, and I've had some fantastic advice/information.

Sparky the website for the Elemental in relation to Crohns is

www.shs-nutrition.com

Hope that helps. If I can help on that front in any way just PM me ok?

Hope today is a better day for you overall. Will be good to see you around a bit more - but do it as and when you can manage it ok?

Thinking of you ((hugs))

i'm kind of in the same boat as you, sparky! my rheumatologist never specified whether i have RA or just bad crohn's arthritis, but i have had a lot of joint problems. the worst was in my jaw, and i had that "fixed" with a steroid injection. the doc stuck a needle in the joints, washed them out with saline, and injected steroids. i don't know if it's advisable for your situation, but it gave me relief pretty fast, so maybe it's something to look into?

Hey Sparky - if it's an option, I would really look into Humira!! At my last flare-up my doc gave me Lialda , Entocort, and a fantastic pain reliever (which i cant for the life of me remember the name of - for the gut pain).

Sparky, I just want to give you a big hug
I just recently started having joint pain that began in my wrist but is now also in the other wrist, both hands, fingers, ankles, knees, lower back, and hips. I start Humira this Friday, and I've tried 600mg of Ibuprofen at a time (my hubby calls them "big daddy pills"), but nothing really helps.
I'm a really good listener, so if you ever need to talk, feel free to PM me any time!

Hmm. I've had odd joint aches and pains the last few years. The latest one is my jaw, which also 'cracks' in a most horrible way once in a while.

Looking up Crohn's Arthritis is sounds somewhat familiar

guys, you're all so lovely Rhov - I have confirmed RA, have had it since long before I had chrohn's and I can now tell the difference between RA pain and Chrohn's joint pain - it's really hard to describe but RA pain is 'deeper' somehow than chrohn's pain, but chrohn's joint pain is harder to ignore? RA pain tends to be pretty symmetrical too, whereas chrohn's joint pain for me tends to hit one side more than the other. They both flipping hurt though, I couldn't say that one is any better than the other! I've had steroid injections into my shoulders and hips and they are awesome - not much fun at the time, but the relief is amazing.

Blondie - thanks! if you can remember the name of that pain reliever, that would be really lovely - I'd just like to go and see the consultant armed with options and suggestions - it's going to cost me the best part of £300 so I will take as much of his time as I need

Santos - poor you honey, the joint pain is mostly what gets me down as I said. I find it very hard to just get on with my life when it feels like everything hurts. Thanks for the offer of an ear, that's very kind of you - I'll be really interested to hear about how you get on with Humira

Beth You sound very fed up pet xxx

Another question for you guys - will one of you guide me as to where I'm best posting a slightly awkward sex related question? Just got a query around pain and how best to manage it whilst still keeping my very lovely, long suffering, sympathetic husband happy...

hey sparky
re your last question, there are topics such as that in the lounge, so maybe reading up some of them in there will help you out. or go ahead start a new thread in there if you wish!

if you dont have the password to get into the lounge, sent a private message to either Nancy Lee or dingbat (as she is taking over for mike while hes away) and either of them will set you up ok?

Beth You sound very fed up pet xxx

I am. Close to tears today. Didn't sleep well last night. Had to get up for paracetamol and codeine. Need some more now

Big hugs, Beth

Just a quick update - saw the lovely consultant (I may be developing a slight crush :b)...

Spent best part of an hour talking to him - couldn't believe he remembered me from 3.5 years ago, but when he saw my name on his private list for today he went and pulled my notes from his NHS clinic where I last saw him.

Upshot is that my bloods/symptoms put me roughly back where I was when I was diagnosed 5 years ago, which I already knew. He's put me back on pred (I'd just weaned myself off them on Monday), but just 15mg. Shouldn't have much effect, if any, on my mood, but means I won't get rid of my lovely hamster face as quickly as I'd have liked.

He's done that as he's starting me back on imuran tomorrow. I did very well on it 4 years ago, so seems a logical place to start - but as it won't take effect immediately, pred is going to bridge the gap. I won't feel anything like 100% on 15mg, but I should be able to function enough to get by. His view is that I have 6 weeks on that, then see him, and if I'm still symptomatic he'll add in either infliximab or humira (probably Humira) until I'm in remission. He was very positive, and absolutely convinced that full remission is achievable by using that combination of drugs.

His aim is to have me pain free by the end of the year, hopefully significantly sooner - both CD and RA pain. Slightly overwhelmed at that thought tbh - I can't imagine being pain free, even on pred there's still some there. I burst into tears thinking about it in the car on the way home and I've no idea why - just a bit overwhelmed maybe as I said.

I really trust this man - he took such good care of me when I first went to him 5 years ago. He clearly remembered our initial conversations, which amazed me. Didn't think I was that memorable, but perhaps it's my voice (sound like Betty Boop on speed with a lithp). He also gave me his contact numbers, and said if I'm not managing, or need advice, to call him and he'll treat me via telephone consult rather than me dragging myself to the hospital. He was very cross with my GP, when I thought about what he said afterwards - but I guess that's maybe because I was a huge success for him in terms of taking me from desperately ill to really well, and then my GP didn't pick up managing it appropriately. A lot of that fault lies with me though - I let things get this far. It just happened so slowly, and so gradually, that it took that episode mid-June to make me see that what I was living with wasn't normal, or acceptable.

All in all, not a bad day. I currently feel rubbish - and had an urgent 'OMG, I need the loo' moment twice whilst in meetings today - but I got home tonight feeling like there may be light at the end of the tunnel.

Thanks for listening, and for advising

Yours

Hamster face

glad to hear it went well sparky!
you sound hopeful and thats just about the best thing of all. a confident doc makes such a big difference.
i know exactly what you mean about crying at the thought of no pain, that happens to me too alll the time. when i really start thinking about it and imagining my life that way, its just comepletely overwhelming because its SO different from all that you know! you just cant even imagine it being real.
happened to me the day after my surgery when my surgeon came in and to see how i was doing and i said "i dont have to poo!!" granted i was still in a hella lot of pain, but that one relief of not having to poo was so significant cause i have had to poo every second of every day for SUCH a long time. how are you supposed to react when something like that is suddenly gone??
well, you cry

keep on keepin' on sparky, youll get there soon i hope this lovely doctor has got it this time!

thanks Kello, and LOL at 'I don't have to poo' You're right though, when something that's been there every second of the day is suddenly gone, it's going to provoke a reaction - even the thought of it.

hopeful is just the right word - he really is very confidence inspiring, in a very quiet way iykwim?

Feeling a bit fed up though this morning - my face has ballooned all of a sudden thanks to the pred, and the thought of at least another 6 weeks of it isn't doing much for me. How shallow/vain is that? I'm also tearful, which I think is the pred again, and I'd convinced myself that 15mg wouldn't have any psychological effects. Headache's back again too. I've only taken 10mg this morning, I'm going to see if that's enough to let me get by. I can't deal with the weepiness, and it's horrid for my DH/DS.

Still feeling cheerful in myself, if that makes sense - I know the tearfulness isn't real, and I'm still all optimistic, just need to get my head round looking like a hamster for the forseeable future i guess

Fish oil is helpful for joint stiffness and pain

Magnesium/B6 are sometimes prescribed for muscle spasms and pain

I've had CD for several years and joint pain at times extreme. Everytime I go running to my Dr. he runs all the usual tests for the different types of arthritits, lupus, thyroid, etc etc..and the tests all come back fine. How can anything hurt so bad and not show up on the tests...The Rheumatologist diagnosed me with myalgia (muscle pain) and artrialgia which I think means joint pain of unknown origin and also said my adrenal gland was asleep from taking prednisone for too long. I think my reg family doc thought it was all in my head.