In limbo

clockworkpurple Member Posts: 22
edited 31. Oct 2013, 17:33 in Say Hello Archive

I hope it's OK to post here without a definite diagnosis. I'm a 33-year-old woman, and my doctor suspects I have some kind of inflammatory arthritis. I've had a dodgy knee for years, but was fobbed off by a previous doctor, and the pain came and went, so I didn't do anything about it.

But about 6 weeks ago the pain came back, joined by the opposite ankle, aching all over my shoulders and, recently, the remaining knee and ankle. (Oh and, as of yesterday, my fingers and wrists too.) It's very painful to walk (/limp) and stairs are a nightmare. The pain is pretty much constant and often keeps me awake at night.

I've been to the doctor (new doctor) and have had lots of blood tests, the only one of which that's come back abnormal being the plasma viscosity, which I've just found out is elevated. Have also had an x-ray on one knee and ankle, which showed inflammation on my ankle.

I'm going back to the docs on Monday, and they'll hopefully refer me. I'm taking Colchicine pills and topical capsaicin cream, neither of which seem to be doing much. (I can't tolerate ibuprofen pills, and the gel did nothing.)

I guess I'm posting here because I'm pretty scared and freaked out by this all...I mean a few months ago I was fine and, whilst a bit of a couch potato, I enjoyed swimming in the mornings before work. I'd just got a bicycle too, but can't do either of those now as it's just too painful.

But I've also got some specific questions, if anyone can help:

[*] Is there anything I can do about the pain before I get a diagnosis?
[*] How long does a referral take (I'm in Bristol if that helps)?
[*] Should I avoid exercise/excessive movement or try and push myself even though it hurts?
[*] Does yoga etc. help?
[*] How do I get comfortable in bed??
[*] Any other advice for a scared young-ish person, who's used to being very independent?

Thanks to anyone who read this far! This seems like a great community and reading your posts has given me more hope than I've had in a few weeks (although what some of you go through freaks me out too!).


  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I've spotted your name once or twice and it's lovely to meet you. I too went through a long period without a definite diagnosis or meds, mine lasted about seven years. The good news is that you are already on colchicine which I know one other person on here takes for her non-specific inflammatory arthritis and it's helping her.

    When you say doctor do you mean your GP? At the very least he should be referring you to a rheumatologist - GPs know a little about a lot but specialists know a lot about a little. I will do my best to answer your questions but I am not a doc - just seventeen years in with this disease in both its forms. Some jackpot, yes? :lol:

    Pain? I think it's a case of getting used to it because if you have a kind of auto-immune arthritis then it's going to hang around for a very long time. Pain relief is not all it's cracked up to be - I prefer the term pain dullers because that is what they do, they dull the sharper edges. The stronger the relief the more you are taken away from the pain, not vice versa.

    Referrals? I have no idea. I lost a year being bounced between rheumatology and orthopaedics. I ended up with rheumatology.

    Learn to listen to your body - my rule of thumb is always stop when I feel I can do more.

    Yoga? I tried that before I knew what was wrong with me and it did nowt.

    Bed? I have a pillow lengthways between my legs (I am a side-sleeper) and just one pillow under my head. I am currently experimenting with a new air-filled pillow and getting nowhere. I've forgotten what comfortable and a good sleep feels like! :lol:

    Absolutely no advice because I am no longer young, I've always had poor health but am very stubborn in doing what I can do for myself, and I have learned over the years what is worth an effort and what isn't. Everyone is different in how they react and adapt to their new circumstances - it's a steep learning curve.

    I have to go now, I'm having a rough day and I have to go and start cooking. I wish you well and please post again on the Living with Arthritis board on here because more people look in on that one. DD
  • clockworkpurple
    clockworkpurple Member Posts: 22
    edited 30. Nov -1, 00:00
    Thank you so much for your kind words dreamdaisy. Yes, when I say doctor I mean gp. She has mentioned referral so when I see her on Monday I'll push for that.

    Thanks too for your advice...this whole thing is definitely a shock, and I guess it's just a case of adjusting.

    I hope your day has improved, and I'll see you in the other forum!