Fibro or ?

[Zolly]

Hi everyone! I was diagnosed with Fibromayalgia in January this year.. even though it had been mentioned before I was diagnosed too I always seemed to think it was something else. I've been trying over the last few weeks to really pay attention to my pain and where it is and I've noticed it's in my hands and fingers, my wrists, my feet and my knees.. I thought Fibromayalgia pain was different to this and it was all over ? I'm very confused at the moment I was hoping my doctor would refer me back to rheumatology but she doesn't seem to want to I feel that I missed a lot out in my first appointment with the rheumatologist can anybody help ? I'm not sure what I expect I understand as with most things symptoms are different in each person but I don't seem to get any answers from my doctor and I just can't get rid of this feeling that it's something else or something as well as ?

 

[vickythecat]

For a long time, and quite honestly even now, I also doubted my fibromyalgia diagnosis. But that was more due to the fact that everyone and anyone with the tiniest amount of 'unexplained pain' was being diagnosed with it at the time. There I was unable to even get out of bed, having had to quit my job and put an end to a successful career, with no energy for things I enjoyed etc. and there they were other patients going about their day, with kids, holidays, hobbies and their fibromyalgia. It just did not add up. (again, I don't want to say these people did not have real complaints, but they could continue on 'living', whereas I stopped living and have been 'surviving' ever since.)

For me, some symptoms make it for sure that the diagnosis was right. Waking up unrefreshed, fatigue/tiredness/exhaustion and weird aches and pains all over my body (both in muscles, joints, tendons...even in my ear, jaw, eyes etc.). I was also diagnosed with IBS many years ago, so things just seemed to add up for me.

So do you only have pain? what are your other symptoms? You are doing the right thing by paying real close attention to your body. I also believe it is important to judge your complaints in a stress-free environment. Take a few days off, do things you enjoy, take it easy, and see how you feel. With that information, the doctors will determine what you have.

 

[Zolly]

Thank you so much for replying. I have many other symptoms..

- Joint pain
- Swelling in hands, feet and knees
- Stiffness mostly in the morning it will take me a while to get going and my hands are getting a lot worse this way I can't bend my fingers and seem to lose my grip a lot
- My skin feels warm around the swelling sometimes
- Fatigue
- Chest pains and shortness of breath

There are many more but these are the worst for me at the moment. Sometimes I feel better for a week or so.. but when it's bad it's extremely bad I'm finding it harder and harder to walk the pain in my feet is unbelievable also noticed a few lumps in my feet and on top of my hand. I did have an X-ray which showed an effusion in my knees I also had plenty of blood tests which came back showing a positive rheumatoid factor and raised CRP I think it was among other things I can't quite remember.

I have been on many tablets for this including Duloxetine, Amitriptyline and Gabapentin.. I just started Pregabalin but none of these seem to have even touched my pain at all they've done nothing..

I'm not sure why I can't accept my diagnosis.. something is just telling me it's more :/ I just don't know where to go from here I feel like my doctor isn't paying too much attention to what I'm saying..

 

[Zolly]

* CRP or CCP ? Not sure exactly which oops

 

[Nodscene1]

I'm really sorry to hear about your pain and other symptoms. Obviously I can't say for sure if it's Fibro along with the other stuff but if you still strongly believe there is something else going on keep pushing for your doctor to send you to see more specialists. Hopefully at some point you will find a doctor who will take things more seriously and possibly find something the other doctors are missing.

It took me 30 years to get a fibro diagnosis (partially because I got fed up with doctors and didn't bother with them for years amongst other factors). Point being I kept pushing and fighting to get answers and eventually got one. I'm sure you won't have to wait as long as I did but don't give up and go with your instincts, they are usually right.

Take care and be well

 

[diamond]

sounds more like rheumatoid arthritis swelling in joints and bumps on hands and feet etc plus raised rheumatoid factor ...do try and see a really good rheumatoogist and raise this as a possibility..im no expert but sound like more than fibro symptoms or could be both. If its RA the treatment is completely different.

I wish you good luck...and only know the bits i do from family having RA.

 

[Chinodera]

Hi,

I understand your confusion as both conditions manifest joint pain, sleep disturbances, fatigue and anxiety. But the hallmark to watch out is that in RA there is usually inflammation in both joints, while fibromyalgia often manifests as widespread muscle and tissue pain. Symptoms of rheumatoid arthritis also last longer, usually six months. But to be sure, please do visit your rheumatologist.

 

[Zolly]

Hi thank you all for replying not getting anywhere at the moment because my doctor refuses to refer me back to rheumatology her information on all of this is wrong I don't know what else I'm supposed to tell her

 

[Pegleg84]

Hi Zolly,
Your symptoms do sound more like RA. Swelling, stiffness, heat, bumps, and your rheumatoid factor was positive! Maybe if you bring some information to your doctor from a reliable source like the Mayo clinic or an association that studies RA, your doctor will be more likely to listen and send you back to the rheumatologist. If not, I'd look for a 2nd opinion (not sure exactly how the system for referrals works in the UK, but in Canada sometimes going to a different clinic or outpatients for a second opinion can be helpful).
In any case, good luck and hope you have more good days than bad.

 

[Zolly]

Hi thanks for replying last time I visited my doctor I spent a long time gathering information from everywhere I could think of and she completely dismissed everything I took with me and printed me out a sheet on Fibro which I went through the symptoms of and one which is restless legs applied to me. I'm not sure I could afford private things are pretty bad as I can't work at the moment so unless I get a referral I won't be able to go. In my letter from rheumatology after my first visit they write if I show anymore signs of RA in the future they'd be happy to see me again.. once again this was completely dismissed and ignored I don't know what to do it's making me feel so depressed I can't go to work I can't see my friends I don't want to see my family really stuck right now x