New to forum but not to Fibro

[Niao]

Hi all

I have lived with Fibro for more than 24 years. Also have Osteoarthritis, Chronic migraines and the usual whole host of other accompanying nasties!

I have recently also been diagnosed with seropositive Rheumatoid Arthritis and this is why I'm posting to say to all ‘ do not be ignored!’

The last 2 1/5 tears has been pure hell! In agony, pains and disability far beyond the usual, as if they weren’t bad enough!

I have tried to get Gps/Consultants to take me seriously and not put everything down to Fibro.

Finally taken seriously, only after having an emotional breakdown and having MRI showing destroyed knee, RF tests were arranged and I was diagnosed. The Rheumatologist was shocked it hadn't been picked up on earlier as my inflammatory markers etc, are through the roof! Also I had been presenting with all the typical signs of RA!

I feel so let down and angry!!! Because it took so long to get here, a lot of damage has already been done!

I have no doubts there will be many of you on here that have had exactly the same experience as me, but for others I just want to say ,always believe in yourself and your own knowledge of your body and keep making yourself heard. Do not be fobbed off with the usual ‘it's ‘just’ the fibromyalgia’ !!!

Now I start a new journey with RA whilst continuing along my well trodden path with Fibro.

[Hazel_Angelstar Administrator FMA UK Staff]

hi and a warm welcome to our community. Sorry to hear that your RA diagnosis was not picked up sooner - and yes, it can be all too easy for every ache & pain to be put down to our fibromyalgia - when sometimes there is something else going on. Hopefully now you have your diagnosis you can get treatment and some relief. xxx

[Niao in reply to Hazel_Angelstar]

Thank you!

[Cazza2612]

Hi, I wish you all the best and hope that the rheumatologist has now got you on some good medication for your rheumatoid arthritis. My aunt has had this for years but was fortunate enough to be diagnosed very early, she doesn’t have the added complications of fibromyalgia.

As for myself I have fibromyalgia which is quite bad and I spend many days in the week in my bed because of pain and lack of sleep. I was also diagnosed with arthritis a few years ago but rheumatologist kept saying it was non specified which I felt a bit annoyed by because it doesn’t really explain anything. I have had hand X-rays which are always notably different every time and the same with hip X-rays. I have been on Sulfasalazine which didn’t really help that much and then had to come off it in February because they felt it could have added to my epilepsy complications. It took 6 months and heard nothing from rheumatologist so I phoned them myself to get some answers to what was to happen next. They eventually got back to me and put me on hydroxychloraquine which cause terrible side effects so had to come off that too. So on nothing at the moment. Had an appointment with the rheumatologist a week ago and she said that she didn’t think putting me on another Dmard drug would help because she felt most of the pain etc was down to fibromyalgia. She just stopped short of saying it was all in my head, I was absolutely furious, frustrated and upset. I asked her what this unspecified diagnosis actually means, she said it is seronegative rheumatoid arthritis which basically means it doesn’t show in my bloods. She said my levels were low at 2. My main symptoms are I have swollen ankles every day even after sleep and swollen hands with nodules on all fingers which are very painful. I have numbness in both hands and sometimes lower arms, sometimes have pins and needles in my hands and arms too.

I know the difference between fibromyalgia issues and arthritis issues so that’s why it’s so frustrating when they put everything down to fibromyalgia when I know it’s not.

The one thing I am pleased about is that I have a marvellous GP who totally understands fibromyalgia and arthritis since she worked in this are before becoming a GP. She has been a massive support to me throughout my conditions. She is waiting for the rheumatologist letter to come in and then will take it from there.

Glad to hear you finally got people to listen to you. We shouldn’t have this struggle as well as the issue with the conditions that we suffer from.

I wish you continued good health and hope you continue to get the support that you need.

Carole xxx

[Niao in reply to Cazza2612]

You have a lot to contend with, poor thing!

Yes, the ‘all in your head’ feeling, know it only too well!

We do know our own bodies and, usually, the differences between ailments, though to be fair I often struggle to know if symptom is coming from one thing or another or is in fact something completely new!

I have known rightly these last few years that my problems were not Fibro, they were very different. With Fibro I had the odd moment or, if lucky ,day that would be a little easier, though these were few and far between! With the RA in a flare, there was not a minute of respite and night time pure hell! Not that my life with Fibro has been a walk in the park, far from it!!! I too spend most of my time in or on the bed!

From hobbling around with one stick as I've done for years due to Fibro and Osteoarthritis, I could suddenly hardly move at all, even with 2 sticks or a rollator.

It's been excruciating to stand up, to move in or on bed, to dress, wash, brush hair or teeth etc. Yes, true can be said of Fibro but there is an extra element to this that’s hard to explain.

Like you I have nodules in my fingers, they are all swollen, will get stuck in a straightened position or a bent one, There is triggering in all. Swelling over knuckles etc .The pain throughout hands, in thumbs and wrists can be excruciating and I can't touch anything, pull up duvet etc

My knees are awful, right one being considerably swollen, whole leg hurts. Achilles tendons and ankles bad, feet/toes, searing shoulder pains. Down arms. Elbow swelling and fusion. The list goes on!

You are not being treated well at all!

I understand that the dmards may not be the best thing with the epilepsy, but surely there is something else they can do? And to being ignored and not followed up on regularly! If there are changes on your x-rays each time surely it's evident there is damage being done. Also, on that note, x-rays do not always show up the damage anyway as my knee looked fine on x-ray but on the MRI 3 weeks later it was destroyed!

I really hope your GP is able to help you as this is not right! And I really hope your epilepsy is under control, that must be very hard to deal with!

I think the only reason they can't put my troubles down to the Fibro is the fact my inflammatory markers are very high, before I had the blood tests they were!