Arthritis pain never ending

[KayleighMeek]

Hello everyone,

All I seem to post about now is enteropathic arthritis but I feel this has been going on to long now and I am gettin fed up. I have been suffering with severe pain in my right hip, knee, between shoulder blades and lower right back. I will have a week were the pain is just about bearable and then a week of excrutiating pain that I struggle to walk or even sit without nearly crying and I think I can handle pain quite well.
I am currently on 25mg week of methotrexate and take 6 sulfalsalazine tablets a day my crp is still raised and my pcv is low but I am only having occasional bowel issues. I have tried pentasa,aza,6mp,humira and remicade and don't know what is available in the uk for me to try next. I had an appointment last week with my rheumatologist and they said I might be able to try another biologic but I didn't know if there are any available in the uk for crohns at the moment. Does anyone know anymore?
I am starting to feel desperate the pain is awfull I take co codamol and tramadol but it doesn't help. Are there any other pain killers that are more effective? I have an appointment with my GI on Friday so I will be asking them for help I really think I need something I don't know what to do.
Sorry this has probably been a bit rambling but thank you for reading x

 

[guest78]

I'm so sorry you are suffering so badly. I don't have many answers for you. Just that I can relate. I suffer from awful Crohns related arthritis in my right ankle and thumb and left knee. I was stuck in a wheelchair and couldn't move. I had to be picked up and lowered in to the bath. I was eventually hospitalised with te crohns where a rheumatologist saw me and extracted all the fluid. This really eased the pain, it was one of the only things that actually did. Apart from sitting in a bath. Has this ever been done to you?

 

[KayleighMeek]

No I have never had the fluid extracted from my joints I will mention it even if they don't do that maybe it will make them see how serious this is. I feel like I am just passed from GI to rheumatologist and each one says to see what the other says and I'm not getting anywhere. Sorry you have had joint pain it is really awful. My partner is very good and he lifts me in and out the bath or up and down stairs when it is needed at the moment he just stands behind me so I don't fall down them. I am getting to the stage where I will try anything to get this pain to go. Thank you for replying I really appreciate it x

 

[guest78]

No problem at all! I know how awful it is. It makes you feel so helpless. Especially if usually you are used to completely normal movement! It's so great that you have a supportive partner, that's really important. Mine was brilliant too.
Definitely ask for fluid extraction. They put me on high dose of steroids to get the inflammation down and then pulled out 4 cup fulls of liquid from my knee. I got some movement back almost straight away it was such a relief!!
I really hope you get some answers! I know it took me ring very very unwell before they paid me proper attention!
Xxxxx

 

[PsychoJane]

Have you tried approaches involving nutrition? I would suggest you to take a look at Dr Seignalet Ancestral diet. It is a near cousin of the paleo diet. The main lines are the same even though they are tricky to follow, I would give it a try for a two weeks if you can handle the changes (it's quite a bit of them at first...).

Here's a link to give you an idea http://seignaletdiet.wordpress.com/diet-basis/

It may worth a try.

 

[KayleighMeek]

Thank you for the suggestion. I am already seeing a nutritionist who specialises in Ibd so am following some changes she has made for me with cutting out certain foods and she has suggested if this doesn't work to move onto the FODMAP diet. I am just gettin impatient and want to stop waiting for something to work its all is chronies ever seem to do x

 

[Su-bee]

I have arthritis as well, but the worst manifestation of it is at night. At first I didn't know what it was until my spouse read about Crohn's patients having a related arthritis, so I went to the rheumatologist. She put me on Humira, but it did not help arthritis, only the Crohn's a bit, and side effect precluded me from continuing. I was on amytriptyline then trammadol at bedtime, which helped me sleep for about 4 hours a night. I hate to say it, but for me, I don't think medication made it finally bring relief, I think the inflammation just subsided after 1 1/2 years.

Honestly, I finally got to a mobile enough point where I could walk for a bit each day and do yoga in the evening, per the recommendation of the rheumatologist. I keep it up now to try to keep the worst of it away.

 

[KayleighMeek]

Sorry to hear that your struggle wih arthritis but glad to hear that it is a bit better now.
I am soon to be stopping 12hour shifts which I am hoping will make a difference to my health and now I am waiting to hear from my GI and rheumatologist to see about maybe trials or what to do next. X

 

[Wilder]

Joint pain has been my main challenge since being diagnosed with Crohn's. I have the kind that continues even when the Crohn's is in remission. I tried sulfasalazine, tylenol arthritis, ultram, limbrel and lortab. I even tried a couple alternative treatments (boswellia, fish oil). The pain was everyday, it seemed, for months and years on end. What finally worked for me was imipramine. It was prescribed by my gastroenterologist. I hope you find some relief soon.

 

[amrycrohns]

Do you not have Cimzia in the UK? It's another biological medicine much like remicade or humira.

 

[KayleighMeek]

Cimzia isn't approved for use in Crohn's disease yet from my understanding but it is for arthritis. I don't know if enteropathic arthritis means that I could have cimzia but I guess that's why the GI and rheumatologist are meeting.

 

[Su-bee]

I couldn't even imagine 12 hours shifts in pain. You are a trooper, but yes, if you can have a less intensive schedule, it will be better for you for both issues.

I am sure your docs will come up with a good plan. Since some of the meds overlap as treatments for both crohn's and arthritis, there's a good chance they'll find something that works.

 

[KayleighMeek]

The shifts are tough but I work in a really supportive team who know about my crohns and arthritis and don't judge me if I am struggling to walk around. Finished one night shift last night but one more to go tonight then 4 off Yay!

 

[Fosterfamily2303]

I suffer from body pain all the time. I am so tired of it as well ! Hang in there. FYI I take tramadol for mine..it helps

 

[KayleighMeek]

Sorry to hear you are suffering as well :-( .I don't handle tramadol very well I can't sleep when I take it, it makes me clench my teeth together really hard and just makes me feel really weird. It does make me care a lot less about the pain but I only take it when I am desperate. I have just taken one tablet tonight and will see how that goes, the pain is really bad.

 

[leahsmom]

Hi All~
My 15 yr old daughter has crohns. She used to have joint pain with her crohns also. Since starting low dose naltrexone (LDN) the joint pain, stomach pains and blood work has improved. Within a week her joint pain was better. Please read on this forum (under treatments) about others that are using low dose naltrexone instead of the biologic drugs and you will find other information there as well. It is not a biologic drug and the only side effect she had was a week of vivid dreams, but they were good dreams so she didn't mind. She also takes apriso and several vitamins. I just hate that so many suffer with this painful disease. God bless you all.