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Crohn's Disease Forum » Support Forum » Crohn's and Arthritis Support Group


 
03-28-2016, 03:00 AM   #1
Charlotte.
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Crohn's and Arthritis Support Group

About this Support Group

Hi fellow Crohnies,

I just realised that there is no Crohn's and Arthritis support group, so here it is!

I hope this can be a place to connect and share thoughts, problems and whatever.

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Abbynormal's Avatar Abbynormal, Archeogirl's Avatar Archeogirl, bambamdilla, Beachbell, BeccaB's Avatar BeccaB, Charlotte., Christi, cmack's Avatar cmack, Colette08, DEmberton's Avatar DEmberton, EmmaLou, Hobbits, Ih8crhns, Johaan458, John 470, Jomo73, jonique's Avatar jonique, mantaray, Maya142's Avatar Maya142, Medwards30, MizzSarah, More Than Pickles, Mulv2222, Napali Coast's Avatar Napali Coast, newbrite, ronroush7's Avatar ronroush7, rrhood1's Avatar rrhood1, warrior2
03-28-2016, 03:03 AM   #2
Charlotte.
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Has your arthritis developed simultaneously to your Crohn's?

Mine has been diagnosed just two months after I've been diagnosed with Crohn's but my symptoms of Crohn's started 8 years before the diagnosis and I was having reoccurring joint problems but did not pay enough attention to it.


I would also like to know if your arthritis is active even though your Crohn's is quite well?
03-28-2016, 12:55 PM   #3
Cat-a-Tonic
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I've got some type of IBD (not sure which one yet, not fully diagnosed) and I also have some type of inflammatory arthritis in both hips (that's not fully diagnosed either but my doctors think it's inflammatory arthritis of some sort). The arthritis symptoms came on about a year after the IBD first manifested. For awhile it was just in my right hip, then it spread to the left as well. I think it might also be in one or both of my knees (my left knee in particular can get fairly painful sometimes). I'm 36 now, the IBD came on just before I turned 30 and the arthritis came on right after I turned 31.

For me, my arthritis seems to act up independently of what's going on in my guts (my IBD is currently in remission but my hips are a bit achey today). Bitterly cold and/or snowy weather, and sometimes even very rainy weather, are the main triggers for my arthritis pain. A few years ago we had a huge blizzard, and my hips felt horrendous in the hours before the snow hit, that was the worst pain my hips have had. My other big trigger for my arthritis pain is not doing my exercises (I went through physical therapy when the arthritis first hit and that helped a lot, and I mostly do well as long as I do my PT exercises regularly) - or, if I do high-impact exercise like jogging, that will really make my hips painful. Low-impact exercises like bicycling make my hips feel better, but jogging or even fast walking can put my hips in pain for days. So no jogging for me, oh well.
04-07-2016, 10:29 PM   #4
jonique
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Hi Charlotte,

thanks for starting the Crohn's and arthritis club I have both as well. The Crohn's started a few years before the arthritis diagnosis. My Crohn's is currently in remission but the arthritis is causing me a lot of problems for the past few years. it seems to be resistant to all my treatments.

I have peripheral arthritis but mildly. the spondyloarthropathy in the neck, spine, SI joints is the main problem.

My rheumatologist just started me on Stelara so will see how that goes. Have only had one injection last week. She is dosing it for the arthritis so it is 45 mg at week 0, then 45 mg at week 4, then 45 mg every 12 weeks.

For exercise, i used to be a gym rat. now, i can manage stationary bike, short walks, aquafit as long as i don't do too much jumping. going to switch to deep water aquafit this week and see how that goes. i do gentle range of motion exercises, stretching, light weights.

will be interesting to see what others are dealing with.
__________________
Dx:
Crohn's Disease
IBD associated Spondyloarthropathy
Migraines
Moderate Fatty Liver

Meds:
5-ASA (Salofalk)
Celebrex
Omeprazole


Previous meds:
Stellara, Cimzia, Simoni, Remade, Humira, Methotrexate, Entocort, Sulfasalazine

Surgery:
1. laparotomy 1986 - Dx Crohn's Disease
2. small bowel resection 1995
3. small bowel resection 2016
04-07-2016, 11:48 PM   #5
ronroush7
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November of the year before last, I was in the ER for Crohn's symptoms. They ran tests on me and told me that one of the tests showed I had some minor arthritis in my lower back. Just recently, I have been able to feel it.
04-08-2016, 09:00 AM   #6
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Hi! I'm new to crohn's and new to arthritis. I was diagnosed with both within the last year. Still trying to figure things out. I'm grateful for this forum and plan to keep an eye out for helpful posts/threads. Thanks!
04-08-2016, 09:45 AM   #7
ronroush7
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Hi! I'm new to crohn's and new to arthritis. I was diagnosed with both within the last year. Still trying to figure things out. I'm grateful for this forum and plan to keep an eye out for helpful posts/threads. Thanks!
Welcome


04-08-2016, 10:24 AM   #8
Charlotte.
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Thank you guys so much for sharing! :-)
It feels so good to know that there are many of us out there dealing with Crohn's AND arthritis. So mine is supposed to be enteropathic arthritis and flares quite badly when I'm in a Crohn's flare (as I am now), but the symptoms differ.
In a Crohn's flare-up my right hip joint is very painful, same with the right knee. In general, I have inflammation (checked by ultra sound) in my ankles, toes, fingers. My sacroiliac joint is/was affected as well (still painful), my wrist is painful as well currently. I also had inflammation in my elbow, temporomandibular joint and shoulder. All along with the other joints before I found effective treatment.
My Crohn's has never been in a longer remission, so my arthritis has always been active since diagnosis.
I had to stop any sort of sports, used to be an active person, cycling to work by a road bike, walking to uni from the bus or underground station etc., rowing, dance, Pilates, Yoga. Now: none of it. Feels a bit as if my life is taken away. The only sports that I avoided as well as possible: Swimming. And that's exactly the only sort of sports that I am able to do currently. Joining a swimming club from next week on, hopefully, when I feel well enough. I hope I can start road biking again only low impact on short distances one day.

How are you coping with not being able to choose the sports that you like or even stopping the sport that you loved?
To me, it's pretty tough. Swimming will probably never replace dance and I felt the dance was something that became part of my personality, the way I can express myself, you know what I mean?
04-08-2016, 10:45 AM   #9
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Has anyone on here felt like giving up? I am just not sure I can deal with this disease any longer. It took many wrong diagnosisís before I was actually given the correct one, which who knows at this point if it is even right. I have had stomach issues since I was 22, I am not 28. I was told I have Crohns about a year ago, before that it was UC. When I was 22 I was told to just go on a better diet. I just seem to not know how people can live with this..? It affects my every day life to the point that I do not have one. I know there are people out there with way worse, but I just do not know how people handle this and be happy. And to top it all off with my diagnosis of Crohns I ended up also getting Lupus from my medication called Remicade. I just joined today because I thought this would help me cope with this horrible disease....
04-08-2016, 10:58 AM   #10
ronroush7
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I wish I could have done sports but my coordination has always been off.

04-08-2016, 11:01 AM   #11
Charlotte.
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I'm sorry to hear you are struggling, Colette. So, you have arthritis as well, don't you? In deed that is super tough.
Of course, I have very bad times as well, but what helps me is to connect with people that are affected as well. And that's probably the only thing that does help as even my closest friends can't say much and don't have the slightest idea what I am going through in these moments. I see a local support group regularly. Is there one near you? Is there a helpline that could provide information? I will also see a support group for arthritis soon, as I need someone who does understand when my arthritis symptoms are too much to cope with, not only a group for Crohn's. I made some amazing friends in the local support group, fortunately they have a group of young adults there.
I would really encourage you to write as much as you need in this forum, it's there to help you, it's a super tough disease. Get in touch with the people and read their stories, it's so motivating reading about fellow Crohnies that are in remission even though their disease has been very, very active for a long while. There is so much new medication on its way (google "mongersen" for example), there has been a huge improvement since anti tnf and other monoclonal antibody drugs and there will be much much more available for us in the future.
Also bear in mind that the disease can have active periods that seem to be endless and better times.
Maybe you can check for other medication by seeing another specialist in a good IBD centre.
Have you thought about seeing a psychologist? That might be an option as well. Life is so beautiful even though it's so hard at the moment. I'm in a flare-up as well, and have never really been in remission since diagnosis, so I kind of know what you might feel like.
Stay strong and beliefe in yourself.
04-08-2016, 11:06 AM   #12
ronroush7
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Has your arthritis developed simultaneously to your Crohn's?

Mine has been diagnosed just two months after I've been diagnosed with Crohn's but my symptoms of Crohn's started 8 years before the diagnosis and I was having reoccurring joint problems but did not pay enough attention to it.


I would also like to know if your arthritis is active even though your Crohn's is quite well?
I have had Crohn's for twenty six years
The arthritis has just occurred recently.

04-08-2016, 11:27 AM   #13
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Thanks for writing to me Charolette, yes I do as well have arthritis. I am not sure if it is due to my crohns or Lupus at this point. It is just so hard because when I get sick they always think its my crohns, but then I find out other news like the new diagnosis of Lupus. If it was not for my hematologist I would have never known I had it. It got to the point of not being able to walk, but it has not been that bad since that time. Although I get scared that it will happen again. Its hard to live with this and maybe this forum will help me and that is why I am trying it out. This is the first time I have spoken to someone other than family about what I am going through, so I guess the next step is to figure out how to deal with it and who can help. I will take your advice and seek other options, I hope we have a support group for young adults around where I live, I will check this out. This disease just affects everything for me and I know life is beautiful, but some days I just wonder if this is how I want to live my life. I keep pushing forward though hoping for some relief, but then I have a horrible day like today and I just donít know any more. I have not been in remission since having stomach issues, so I do not know what it feels like and therefore this is why I am responding the way I am. I havnít seen my doctor, because it seems like nothing is working. Humira works maybe sometimes and at about 30%, I do not even know what it feels like to be normal any more anyhow. This round of Humira is not working at all though. I think I need some kind of support/help though because I am just on edge and have had it with this disease. I cannot make any life decisions without think about this horrible disease. Also I have to pretend to my family that I am fine because who wants to be around someone always complaining? Not that they would even understand my pain any way, I think they just think I poop a lot (Big deal huh). Plus with being anemic and having no vitamins in my body does not help either. Taking a humira shot, a b12 shot, iron infusions and so much more, so its just getting to me. I am young and I want to date and go out and do things, but how can I? No guy would understand, trust me I have tried. I cannot deal with this any longer. I have a great offer for a new job, but do I go? How could I? I might get really sick the first couple of days and how would they understand? I go a full day without eating until I get home because of fear. I do liquid diets, but water makes it worse sometimesÖ.I literally want to give up all together, this is just no way to live life. I will just keep pushing through and hope a miracle happen, I guess. Thank you though for your positive outlook, believe me I need it....
04-08-2016, 12:07 PM   #14
Charlotte.
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Colette, have you tried Ensure, ModulenIBD, Elemental028, Fresubin, Peptamen or enteral feeds like that? At least they decrease the symptoms dramatically, they don't seem to be a long-term treatment for adults, that treats inflammation, but maybe it helps you to feel a bit more normal. I have been on it exclusively for a while but symptoms returned when I went off of it. I started a full elimination diet, adding one food by one, but symptoms returned even without dietary change at some point. Enteral nutrition might be a good way to feel "normal" for a short while, believe me, it also feels good emotionally being normal for a while again, even if it is only short term.
The most important think probably is to find a doctor who wants to help you and does not want to treat symptoms but a human being. I hope you can find a doctor who is understanding and has enough knowledge about the disease.
If there is no local support group, why not get in touch with the other younger patients in the waiting room or when you wait in a line? My doctor treats many many IBD patients, so there is always someone to get in touch with. Often I just ask: Crohn's or colitis? If there is misunderstanding you know that that person does not have IBD ;-) If not, the rest comes naturally.
Try not to hide your disease. If you are open with it, people can understand, otherwise they don't know what is going on and think you are absent, tired, angry or whatever. You don't need to go into detail for everyone, but you should with some people. Choose one friend that you talk to first and you will see that it's much easier than you think. Your friends want to be there for you, that's what friends are for, because they love you and they would appreciate the same think if they were in your place. Later, talk to other closer friends. Apart from colleges or people in the work field, I talk to everyone about my disease, but this has not always been the case. I have also hidden my symptoms from my family in order not to see them worried. Your parents are there for you even though you are an adult, you don't need to talk about every aspect but for me it is helpful to let them know. You don't show any weakness or something but it's responsible to talk honestly to them. Of course, it's your disease, but you don't need to carry it all by yourself. Feel free to message me anytime by a private message.
04-12-2016, 12:01 PM   #15
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Did anybody's arthritis start as an attack? Nearly six years ago when I was 20, I was having some bowel issues and thought I was lactose intolerant. But I also had a "back attack" twice during this time. It came on slowly after I had a stomach ache and back ache from having a Tim Horton's double double (a cup of tea to all you non-Canadians) and progressed into my back seizing up and feeling like every bone in my back was brittle and breaking. Quite scary. And of course being 20 and busy at university I didn't go to a doctor. Instead I completely changed my diet and eventually my bowel issues went away.

Speed up five years, when I was 25, new bowel issues started in Nov.-Dec. 2014 and blew up in July 2015. I was initially dismissed by a doctor as my bowel symptoms had only just started. He told me to monitor my health. Another doctor in August told me I had IBS. By September I was having other strange symptoms such as waking up in the middle of the night with pins and needles in my legs and hands and then at the end of the month I started to have achy feet which was making me limp a bit, but mostly in the evenings. I thought it was because of my flat shoes but I wore proper supported sneakers at work (I was a very active ESL teacher). So I went for a foot massage. Didn't help.

Then, near the middle of October I woke up in the middle of the night with that same back attack I had when I was 20. I could barely move, let alone breathe. The pain was stabbing into my lungs and chest. I took some Tylenol and tried to go back to sleep. It went after maybe 30-60 minutes, just like the time before. This was worrisome to me, but the worst was yet to come.

A few days later I woke up with a "leg" attack. Both my knees and ankles were in excruciating pain. The only way I can describe it is that my knees felt smashed in with a mallet and my ankles felt broken. I couldn't move them. I lived alone. And I was terrified. I wondered if it was because of all the heavy stuff I carried home from IKEA the night before. I had to pull my pajama pants with my hands to manually move my legs into a sitting up position. Then I tried to get up. I had to use the doorknob to pull myself out of bed into a standing up position but it was almost too much. Having my full weight on my legs was excruciating and I was all but screaming out in pain. Walking to the bathroom was the longest walk of my life. I was worried about falling and damaging my legs when I walked across the living room with nothing to hold onto. It was like learning to walk for the first time but walking with stiff weights on my legs and excruciating pain - very robot-like. I couldn't bend my knee. Going to the bathroom was hell as I had to hold onto the door knob and hang off the tub to bend myself down and pull myself up again.

Slowly over a few weeks this became my life. Pain attacks at night, stiff legs during the day. I couldn't bend down anymore, or climb stairs. Then the pain spread into my elbows and wrist and one finger during night attacks. Then I really couldn't get out of bed. It was like my body was killing myself. I could feel the pain coming on in my arms and hands by starting out as this cold feeling, then pins and needles and suddenly the pain was there and I couldn't use them. Some acupuncture did temporarily help me but in the end I was a cripple within a month and had to return to my parents for a few months to take care of me (I was in Hong Kong and had to come back to Canada).

The first day on prednisone, I could walk again. The pain in my arms, hands and legs disappeared like that. It's seriously a miracle drug. That's not to say that I could do stairs right away. My knees were pretty weak, the disease had eaten away at my muscle and I was down to 106 pounds after being 126 (then I lost another five to surgery in December). My dad had to help me get up the stairs into the house. It took my about a month to be able to do stairs normally again.

The last three months I have been 95% fine. I did have another back attack in January and then some pain in my spleen/kidney area in February but the hospital was very puzzled about it and found nothing wrong with me. They did an ultrasound last month and discovered that my liver had changed sizes within three months but that wouldn't account for the pain since the pain was in a different area . (Nothing to do with arthritis, but it's pain related).

This was how my friends saw me during this time. They could only see the fact that I couldn't walk /had difficulty walking. I think it's difficult for many to fathom that it's related to bowel issues as I was diagnosed with Crohn's when I returned to Canada. And then people get weird about bowel diseases. I'm a very open person but it's really an invisible illness unless I get the arthritis. And that's the only thing people can see what's wrong with me. They will ask me "oh how are your legs" but it's not just that. That's just one symptom out of nineteen.

Thank goodness I finally have my life back because not being able to walk really robbed me of all independence. I had to quit my job and lost a lot of money to return to Canada for treatment and while I am still sad about all my previous opportunities, nothing can be more important than good health. And thank goodness doctors took serious action when they saw me in Canada because in Hong Kong, they were just letting me suffer on pain killers and arthritic medication when what I needed was steroid treatment.

If anybody feels like they've had a similar experience with pain attacks, let me know. I feel like my symptoms are different from others and it would be nice to know that I'm not alone. Hopefully they don't ever come back, but it sounds like they do with flares and I'm not looking forward to that. I can deal with bowel stuff, but not the arthritis. It is seriously the worst thing I could wish upon anyone.

That's my story, sorry it was so long!
__________________
Diagnosis: Crohn's, Dec. 2015, at age 26
Meds for CD: Sulfasalazine since Aug. 2016, soon to start Entyvio (Aug. 2017)
Things I take: Probiotics, 1200 mg calcium/mag, 1500 mg vitamin d, occasional Tylenol and loperamide.
Things I was taking: IBD-AID diet, Vega, 50mg prednisone, hyoscine butylbromide (IBS diagnosis), ibuprofen for arthritis attacks, Celebrex for arthritis. 5-ASA....
Currently: Still not in remission but have 3-4 symptoms.
04-12-2016, 12:38 PM   #16
Christi
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I think i might have athritis as all the pain in my hands, feet and knees are pain in my bones and nothing seems to relief the pain i am seeing my GI tomorrow and hope we can get something sorted. When my feet and knees hurt i cant walk and when my hands are a problem i cant even hold a cup
04-12-2016, 02:07 PM   #17
ronroush7
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Chiropractor helps mr

04-12-2016, 02:07 PM   #18
ronroush7
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Me

04-17-2016, 08:08 AM   #19
Charlotte.
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@Archeogirl: Thank you so much for sharing! That sounds like a tough journey and I can relate to your attack-like symptoms. Mine have been quite similar in many aspects, I can also relate to this "robot"-like walking etc. I describe the pain that I have like a big truck parking on my knees and ankles and not moving forward a single bit. In my other joints the pain feels different, brighter, sometimes cramp-like, not easy to tolerate as well.
Hope you won't have these attacks in the nearer future again and that remission keeps stable for a very long time. And yes, prednisone/prednisolone is such a miracle drug. During my first course of just budesonide, my arthritis pain was gone on the second day :-D and returned on the fourth, as budesonide is just not strong enough for my Crohn's...
04-17-2016, 08:09 AM   #20
Charlotte.
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@Christi: What did your doctor say? Did he refer you to a rheumatologist?
04-17-2016, 11:06 AM   #21
my little penguin
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Ds is 12 and has both
He was dx with crohns at age 7
And juvenile spondyloarthritis at age 10.
His is independent of Gi flares
He takes humira weekly and Mtx for crohns and arthritis

He uses volteran gel daily on his heels ankles knees and neck
He uses paraffin wax on his hands plus resting hand splints
Hot packs /cold packs and swimming weekly help a lot
He is hla b27 positive
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04-17-2016, 02:39 PM   #22
Christi
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Charlotte my GI sent me for xrays , my knees were so sore on thursday i could barely step on it and climbing stairs were also painfull jeez my hands still gets sore and this makes me so sad for two days now my feet are so swollen i can barely see my ankles
04-17-2016, 07:27 PM   #23
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Christi, not sure what xrays will tell you. I had xrays when I had my second knee/ankle attack and they couldn't find anything wrong. They actually said it was probably a pinched nerve in my back, gave me some Tylenol and menthol rub and sent me to hobble home. This was pre being diagnosed with Crohn's though.
Are you having blood tests to examine your inflammation levels?
04-18-2016, 12:41 AM   #24
Christi
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Archeogirl yes they took some blood aswell i hope that helps in some way
04-23-2016, 09:22 AM   #25
Charlotte.
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@my little penguin: You name it, swimming. It also makes a huge difference for me. I had to give up road biking as well, after already having given up all my other sports including dance, yoga etc. Swimming is not fun for me but it's worth it in terms of minimal pain afterwards, especially the better I am in the different styles regarding technique.
05-18-2016, 05:33 PM   #26
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Hi all. This is my first time on here so reading your stories and all posts it has inspired me to introduce myself. My name is Jo,I'm 43 years old and have had Crohn's disease since 2005. In the last 3yrs I have undergone 4 ops including total removal of my anus and the majority of my intestines resulting in an Illeostomy that recently had to be re-sited due to a bit of a mess from a previous surgery in April of last yr.
In the last few months I started experiencing a lot of pain in lower back,hips,wrists,knees and swelling of my feet. After being referred to a Rheumatologist I was given an MRI and Bone Densa scan which resulted in the diagnosis of Ostoeopina....which I am told is not as bad as Osteoperosis...I feel for all having being diagnosed with this as the pain I experience results in getting worse by sitting too long and even wakes me numerous times a night!!
My meds have previously all failed so I am now on meds called Salazopyrin which haven't made a blind bit of difference considering they're supposed to help Rheumatoid Arthritis!!! As well as this I have an injection of steroids into my bum every fortnight which also doesn't last too long at all!!!
This forum as well as the others are a great help and sooo informative
Thanks for taking your time to read this and I hope all goes well for all

Kind regards

Jo
05-18-2016, 05:37 PM   #27
ronroush7
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Welcome. I am sorry for all you are going through. I hope they can get you on the right mixture of medicines soon. Looking forward to hearing more from you.

05-18-2016, 09:27 PM   #28
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Jo - it sounds like you've been through hell with all those operations. I too hope they can find the right mixture of immunosuppressants/anti-inflammatories for you. For me, a three month treatment of prednisone saved my life. I am pain free going on nearly six months now and my joints are strong again. So I have hope that something will be found for you to return your life to some semblance of "normal".
xx
05-19-2016, 11:30 PM   #29
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I think i might have athritis as all the pain in my hands, feet and knees are pain in my bones and nothing seems to relief the pain i am seeing my GI tomorrow and hope we can get something sorted. When my feet and knees hurt i cant walk and when my hands are a problem i cant even hold a cup
One of my friends also had knee arthritis problem, and she is taking acupuncture treatment from physiomobility Richmondhill, and now she is getting free from her pain. I think acupuncture is the best alternative treatment for arthritis. Many of those who try it find it to be surprisingly effective. I think acupuncture treatment will benefit you too. Just take a try.
05-25-2016, 05:57 AM   #30
Charlotte.
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One of my friends also had knee arthritis problem, and she is taking acupuncture treatment from physiomobility Richmondhill, and now she is getting free from her pain. I think acupuncture is the best alternative treatment for arthritis. Many of those who try it find it to be surprisingly effective. I think acupuncture treatment will benefit you too. Just take a try.
I tried acupuncture at a specialist centre for Chinese Medicine and it made my Crohn's worse (cramps and more tight feeling of the muscles around the intestines etc.) BUT it did help some for my arthritis pain, nothing for the degree of inflammation, but the pain decreased for a few days, so I had to go there very very often. As I was working as well, I could not go as often as I would have needed during the weeks, so eventually I stopped seeing that doctor.
It also ďcovered" the real degree of inflammation, e.g. in my ankle, so I thought my condition would improve, which was not true. I should have changed medication earlier in order to really address the inflammation, not JUST the pain. If you address both, well done!
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