Who knows!

Sharon2960

At my last rheumy appointment, I was informed that I now have Osteo in my hands and feet - yep, the double - thanks! Changed my anti inflams and sent me on my way. Here I am, 2 months later, and 5 months before my next appointment & I've been struggling for the last 3 weeks or so with painful shoulder, both elbows, hip, both knees, both ankles and I'm just sooooo tired, but not getting anything like a good nights sleep! I decided to ask for an earlier appointment. They will put me on the list for a cancellation. For now, the specialist nurse is saying that my inflammatory markers are fine, and is suggesting its osteo playing up. Would this really be the way it is? I'm not sure whether to hang on & speak to to consultant or see my gp - any words of wisdom greatly appreciated; thanks

GraceB

Sharon, sorry you are struggling. I'm not medically qualified so can't advise. What I can say however, is that if I were in your shoes, I'd be talking to my GP and soon. Hope things settle soon for you.

Take care,
GraceB

applerose

I have OA in my hands and feet and RA. My inflammatory markers were fine last year but still in pain and getting more and more tired. I've got an appointment at the RA clinic at my GP's surgery next week to get my bloods done and a general check up. I think maybe you need to see someone sooner rather than later.

[Deleted User]

Hi Sharon,
as others have said with the amount of symptoms that you presently have it would be a good idea to try and see your GP and maybe even try to get an earlier appointment with your rheumatologist?
Most importantly look after yourself and don't suffer in silence.
Best Wishes
Sharon

Paleogirl

I've been in the most excruciating pain in my knees, elbows, ankles and well as usual hands and feet over last few weeks.

My inflammatory markers however have been normal. The rheumy nurse says...yep it's the RA and just because the markers are normal doesn't mean it doesn't hurt. Your disease is your disease.

I would go back and see if you can get at least a GP appointment xxx

frogmorton

Oh Sharon!

Our bloods often don't reflect what we are going through. I hope your cancellation appointment comes through very soon.

In the meantime I agree with the others I don't know what painkillers you are on, but I was given amitriptyline to relax muscles and it does help me sleep too. Sleep can really help us get through hard days.

Love and ((()))

Toni xxx

Sharon2960

Thankyou all for very wise words! I had my flu jab yesterday & went to the receptionist afterwards to collect a prescription & make an appointment - I was firmly told that they'd just closed everything down and I'll gave to go in on Monday! I will arrange to see GP, though things have been a bit more comfortable the last couple of days. I have Cocodamol & paracetamol; the anti inflams (etodelac) don't seem to do any more than naproxen did! I previously tried amitriptyline, but just felt like a zombie, not really with it at all; as I still work 3 days a week, I struggled to cope feeling like that lol! Anyhow, I'll see what doc says, when I manage to get an appointment!

Starburst

Hi Sharon

I'm sorry to hear you're in so much pain. It's hard when bloods don't correlate with how you feel. I believe that we know our bodies better than any doctor could.

Have you been seen at a pain clinic? I'm awaiting a referral but I've heard positive stories. There is lots of info out there (online) about pain management which I have found helpful. I think it's the pain society who are very good, as are pain concern. A good GP is a must. I find talking about it helpful, hence why I'm a bit fan of forums and chat boards. A problem shared is a problem halved and all that. We are always here.

Take care.

Sharon2960

Thanks for all the comments, much appreciated. I had a VERY quiet, lazy weekend last weekend, with lots of rest; experimented a bit with pain relief dosage and I've had a much more comfortable week this week. I've had a revised rheumy appointment thru for the end of November; so I'll be busy keeping notes etc & we'll see what he says!

stickywicket

I'm pleased things are a bit better for you, Sharon. Sorry I missed this thread earlier but it's been a bit hectic here since we moved house. I think you're doing exactly the right things. I hope they continue to pay off.

Sharon2960

Sooooo, saw my consultant yesterday; who gave me a thorough examination of all my joints, after going through all my records and x-Rays etc. He said my inflammatory markers are all good and there is no inflammation; that there is mild Osteo in my hands & feet. But that the cause of all my pain & fatigue is fibromyalgia; he's said I can continue sulfasalazine if I want 'just in case', and prescribed garbentin. after discussing with him, I've decided not to take sulf any more, (nor éto delay etc); I'm seeing my GP on Tuesday to talk about Garbentin v trying just pain relief, and the other things suggested eg CBT, hydrotherapy. I felt/feel shell shocked to say the least - good cos he says there's no inflammation; not so good cos there's a different diagnosis! Today I feel absolutely shattered, I'm sure due to the emotional swings I've felt over the last 24 hours! Sorry to ramble on, and thanks if you've got to the end of my tale! Have a good w/e everyone!

stickywicket

A new diagnosis always takes some getting to grips with. I remember the astonishment when I was offered my first TKRs and I said I thought you only got them for OA and was told anyone who had had RA for as long as I had would have OA too. I'm pleased to report I know nothing about fibro though.

I hope the gabapentin helps. Quite a few on here take it or have taken it

I wonder why you were offered the chance of dropping the sulph. Is he thinking that you don't have an inflammatory arthritis after all? Because, if you do and if your inflammatory markers are low, surely it's the sulph that's keeping them low. I think I'd want a chat with my GP, once the consultant's report had been received, to find out what the thinking was on that.

Anyway, I do hope the gabapentin helps with the pain. I believe most people take it quite early in the evening so as not to be drowsy in the morning. Good luck with it.

Sharon2960

Thanks, Sticky, for your reply! I did indeed see my GP; he patiently discussed everything with me again. He agreed with the suggestion/decision to come off the sulf, and that if I feel the inflammatory levels are increasing at any point, then I must go for a blood test and go back on sulf if needed. They're both happy with my current exercise; GP has pointed my in the direction of a website, as there isn't the option of CBT locally. There also isn't any hydrotherapy locally, which was another suggestion - but my lovely other half has arranged membership of a spa at a local hotel, which has a lovely warm pool that I can swim in. So, for now, I've got a bit more used to the situation, I'm now on 2 Gabapentin per day, increasing to 3 next week; I'm seeing GP 1st week in Jan - so I'll just watch this space & cross my fingers!

stickywicket

Oh that does sound like a plan! Indeed, several good plans. I hope they bear fruit.

dreamdaisy

I empathise, it's not easy trying to manage three conditions each requiring something different (or nothing at all :roll: ). My fibro is a nuisance, it causes overall tiredness and muscle tenderness. I stopped the sulph some time ago because it has never helped the joints whereas a friend of mine (also with PsA) is wonderfully controlled on six tablets per day and has been for years; I tease him he has PsA 'lite'. DD