Don't know what to do - awful arthritis

[guest78]

Hi all
As some of you will know I am waiting for an ileostomy. I am meeting my surgeon in a week.
I have suffered with a perianal flare since September. With arthritis flaring up on and off. Dr has given me 15mg co-Codamol for the arthritis/tail end pain. But my knee has gotten awful. It is hugely swollen, warm to the touch an is agony. I cant put any weight on it. I have crutches but due to being so poorly I have no energy to use them. This is made worse by an achey right ankle and thumb.
I am basically stuck in bed. Even rolling over hurts my knee.
I don't know what to do I have completely had enough

 

[guest78]

Forgot to mention. I am currently on buscopan, budesonide, humira, aza and co/Codamol

But still have a temp of around 38. It never drops 37.4 and goes up to 39.9.
Bloods 3 weeks ago didn't show an infection.

 

[KayleighMeek]

Sorry to hear you are suffering with joint pain. I am in a very similar position with the pain going past the point of being able to walk around. Today I had an intramuscular steroid injection and they usually start working in a couple of days. Have you ever had these before? Also having an steroid injection into the joint itself can help its sore for about a day then is starts to get better. It's not a long term solution but it gives you a bit of relief and maybe a good nights sleep.
I really do feel your frustration it is hard enough feeling crap because of crohn's but then not being mobile can really get you down. Will you continue the medication you are on after surgery? Or are they thinking of changing it?

 

[guest78]

Thanks for your reply.
No I haven't had any treatment apart from when I was in hospital in December they extracted fluid from my knee as they were worried it could be infected.
It is awful I am in so much pain.
I'm not too sure, I have asked and they said they were going to have a meeting to discuss everything & work out what meds ill be kept on :/
I'm just worried about how long I'm going to e stuck like this

 

[KayleighMeek]

The waiting is really difficult, what I have been through sounds like a similar time frame to yours as well I was having problems late last year and it just dragged on and on. If you are feeling really bad try phoning them and explain you really need some help even if its until they decide on the new treatment plan.

 

[guest78]

Yeh I think I might have to.
I can't see how I'm going to be bed bound until surgery, which may not be for 6 weeks.
My consultant does know everything but I dot know if she realises how bad it is :/
Thanks so much for your help
The waiting is awful, my symptoms first started in June 2012 & got bad from September. It's just too long.

 

[KayleighMeek]

I think sometimes the manifestations of the disease do get overlooked and like you said they don't realise how much they can have an impact.
It really is to long to leave you like this hopefully they can get it sorted for you soon. x

 

[guest78]

Thanks so much. It really is too long now.
I hope you are okay!
XX

 

[KayleighMeek]

I am doing a lot better, still having a lot of joint issues, but had my appointment yesterday after a long wait and now have a plan in place so that's making me feel much more positive about things. Did you manage to get hold of anyone?

 

[guest78]

Ah thats brilliant. Its great what having a plan of action does!
I rang the Dr for higher pain meds and they called me in to see them, thinking they would have to send me in to hospital. thankfully! they decided not to, and I have had my pain meds upped and an anti-inflammatory gel given to try and bring down the swelling so that i have some more movement.
i've been told to call back tomorrow if theres no improvement.
i'm hoping that it means i can at least get a decent nights sleep!

 

[KayleighMeek]

That's great news at least they are listening and you have something to try :ybiggrin:
Fingers crossed that you get a good nights sleep

 

[guest78]

Hope so! Thanks so much xx

 

[Farmwife]

I'm so sorry GEC your going through this. I hope the pain meds help. My Grace since she could walk has had bad (not as bad as you) knee pains. She also would hate to roll over in bad. My heart goes out to you. HUGS

 

[guest78]

Oh thank you so much.
It is awful, something as simple as rolling over should not be so hideous!
I hope your Grace is feeling a lot better soon!
X

 

[nevilletanner]

i recently got diagnosed with ostiopinia which affects my knees and especially my neck , the doctors prescribed a cream made from chili peppers which really helps a huge amount.
its long lasting aswell .. inquire about AXSAIN 0.075% w/w cream ( might be called CAPSAICIN cream in some places)

 

[guest78]

Hi! I have never heard of this, I am definitely going to ask about that. Thanks so much! X

 

[PatrickL]

Hi! I have never heard of this, I am definitely going to ask about that. Thanks so much! X

GEC.. I suffer from something that sounds extremely familiar. Knee swells up to the size of a large grapefruit (or larger), warm to the touch, joint is completely immobile due to the swelling, extreme pain (like pass out excrutiating) especially if I try to walk. Need crutches.

From everything I've researched and discussed with my Rh and GI doctors, for me at least it's reactive arthritis, systemic in nature due to the Crohn's. Getting my Crohn's under control has absolutely helped with the outbreaks of the reactive arthritis.

Please have your doctors drain the knee. The swelling can be destructive if allowed to persist over time. It also relieves the pain greatly. The fluid may re-fill the joint, and that's OK just get it drained again.

PM if you want to discuss further. Best of luck.

 

[Poop2Much]

I'm with Patrick on the reactive arthritis front. If I keep my gut in check, my arthritis is virtually non-existent. I was diagnosed 22 years ago with Crohn's and ankylosing spondylitis but, through observing my body over time, doubt that I have AS. I avoid foods and drinks that I know make my gut angry. For me that means no alcohol, very little red meat, no soy, and a few other things.

Have you attempted to change your diet to see if that helps? Do you notice a direct correlation between GI problems and the onset of an arthritis flare-up?

 

[KayleighMeek]

Have just seen this post pop up and wondered how has your joint pain been after surgery GEC? Hope your doing well