Well, had my appointment this morning with the Rheumatologist, who was absolutely lovely. He listened to what I had to say and at least appeared as if he were taking it all in and taking it seriously.
Scanned my hand, which has been the worst affected area, really thoroughly. Looked back at recent x-rays very thoroughly too, and showed me and explained all results of recent blood tests done by GP.
To conclude, he is pretty sure I DO NOT have RA (phew) but have Fibromyalgia. He took some time explaining the nature of this disease, and ordered another batch of blood tests just to make sure, as my last ESR was "borderline". There is also one blood test tat GPs aren't allowed to request at the moment (most of you will probably know what this is) that he wanted done just to confirm it's not RA. He did say, however, that he thinks I may be in the early stages of OA in some of my finger joints, and pointed out the evidence on the x-rays taken when I broke my wrist in March. This, however, is not bad enough to require any further investigation at present.
He is handing my care back to my GP unless the GP feels he wants him to see me again. All in all a very positive experience. Am heaving a huge sigh of relief that I do not seem to have RA, but now starting to research Fibromyalgia to try and kick it as best I can. It is interesting reading the Fibro leaflet he gave me to note how many symptoms I have been experiencing for some time now, before this recent flare up. I think I may have had this for quite a while.
Thank you for all your support and advice xx
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MAGSWAT
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You have my sympathy as i have fibro and it is very painful i can tell you that much. Fibro is chronic pain and it also makes you forget things, i call it fibro fog.
Glad you seem to have had a positive experience as I did this morning.Also good to hear you are not likely to have RA. Hope your blood tests confirm his suspicions
crisxx
Hi Magswat - that is good news because although Fibro sounds horribly painful at least it doesn't do damage to the joints in the same way as RA and the medicines aren't as aggressive or potentially toxic. And really pleased that you had such a nice and sympathetic rheumatologist too. Take care and hope that the ant CCP test is negative and rules out RA for you. Tilda x
Thanks everyone. Ah - that was it....CCP! I knew it had a couple of Cs in it! Thanks Tilda!
Cris - it makes such a difference to encounter a nice doctor, doesn't it? At least you feel they are taking you seriously and taking their time to ensure you receive the correct diagnosis and treatment.
To be honest, it's all a bit of a relief for me. I have been ill since my late teens and don't feel as if I have ever really been taken seriously, or been given any proper professional support. Secondly, as you say, Tilda, there is no joint damage with Fibro, and not so much medication required (hopefully). I think my main problems at the moment are the fatigue, 'fibrofog' and feeling of imbalance/dizziness. All of these I have had for many years and can now, at least, give a name to! Sounds silly, but it does help to know you're not just going mad! Funnily enough, it looks as though I also have TJD, which can cause dizziness. Maybe I'll be able to get that under control, too, for the first time in over 20 years!
Also, it was interesting to see that the leaflet on Fibro given to me by the Rheumy is produced by Artritis Research UK. From this, I assume that Fibro is regarded as being in the same 'family' as inflammatory arthritis?
i've just had a quick look through the titles of your other blog, and i was just wondering has your rheumy considered psoriatic arthritis?
anemia, foot pain and the problems you are having sound very familiar to me. (i have pa) the way your pain is going around your body like a ping pong ball is something which happens to me - i never know what joint is going to play up the next day when i go to bed. it's impossible to get used to it!
before i was diagnosed, i was given the alternative diagnosis of fibro too but i think that fibro affects a lot of us with the inflamatorty arthritises.
if you've got joint damage i wouldn't rule an inflamatory arthritis out just yet, yes your fingers could have sucumb to wear and tear over the years but its a bit odd that when your body is healing your being left with joint damage.
my pa was nearly overlooked as fibro until i had a blood test which looks for spondyloarthritis and i only got that test because i had back pain.
it might be worth asking your gp/rheumy to consider psoriatic arthritis at your next appointment.
Thanks for that rattusrattus. I do actually suffer from back and neck pain, which I stupidly forgot to mention until I was just about to walk out of the door. He did ask me, however, if I had psoriasis, which I don't.
I will see what this new set of results shows up and take it from there.
One thing that did worry me a bit was that my GP had said I had 'mild' anaemia, but the Rheumy said it was severe (a count of 6???). After 2 months of iron tablets and trying to eat more iron-rich food, it is now 16. I am just about to start another 3 months' worth of iron tablets.
I'm also anaemic and have to take iron tablets daily ,I thought my count was low at 9 !!, u must have felt so tired,I felt shattered wen mine was low,I'm so glad you had a lovely supportive dr.xxx
Yes I'm much better but as soon as I stop taking them I become anaemic again,so I take them daily now and its up to 12.5 and thereabouts.mine is due to my monthly cycle,you will feel better for taking them xx
At least you know what causes yours. I have no idea, except that I am virtually vegetarian by plain virtue of the fact that I just don't like meat that much! I have been making a conscious effort to eat more, but can't say I'm keen! Been shoving the dried fruit etc down as much as possible, too, and trying to eat lots of green veg! Hope yours is stabilised soon, Shell.
Hi Magswat
Glad to hear your appointment went well. Just thought I'd point out a couple of Fibromyalgia-specific charities we are aware of if you wanted to find out more.
Have jsut received a copy of the letter the Rheumy has written to the GP. No real surprises, although he hasn't completely ruled out a RA until he gets the latest blood results back. He mentions evidence of nodal OA, and says I have "really very marked" painful areas around most joints. I could have told him that!!! I'm assuming that's the Fibro??
I'm now waiting for him to send me a copy of the latest blood results.
Whatever all this does end up to be, I feel it's getting worse and I am not coping well with work, life etc at the moment. I am in constant pain in my arms, hands, legs and feet, and have stiff fingers, knees and elbows. I also feel constantly shattered, dizzy and altogether not with it at all. Not very conducive to work, I'm afraid!!!
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