Fibromyalgia - newly diagnosed

Bones, joints and muscles
1

Hi All,

In December 2012 I had a rash all over my skin then all my joints swelled up to the point I was virtually immobile and in great pain. I saw 4 GPs in about 10 days and all agreed I needed blood tests but as it was Christmas week I couldn't have them.

On New Years day the pain that was in all my joints went to my chest and my daughter called an ambulance. I was admitted and stayed for 1 week, coming home with prednisolone, tramadol, cocodamol and brufen and a referral to rhematology. The rheumatologist had seen me in hospital and said 'it's not rhematoid arthiritis but it's a very good mimic'

I saw the rhematologist in May who read my hospital letter and told me I didn't have RA and discharged me.

To now cut a very long story short the pain has never left me and after referrals to different consultants and many blood tests my GP has told me I have fibromylagia. In a bizzare way I was actually relieved to get a diagnosis as I was beginning to think the docs thought it was all in my head. No diagnosis meant I had no idea what I should or should not do.

I had never heard of this and so my knowledge is only what I have read on the internet.

In July I was immobilised with pain and my GP was on holiday so I had to see another GP who gave me 300mg Gabapentin. I took 1 tablet and about 3 hours later I collapsed and was 'out of it, virtually unconcious' for 4 hours. I should add I'm on steroid medication for low blood pressure and the 'out of it' is a typical thing for me when my blood pressure drops too low.

My GP last week on telling me it was FMA said she wanted me to go back on gabapentin and said the GP who prescribed it for me in July hadn't factored in my low blood pressure and she wanted to start me on 100mg 3 times daily, increasing by 100mg each week until after 9 weeks I end on up to 900mg three times a day, unless of course  I get the pain managed on less. 

Stupidly I didn't ask about continuing to take cocodamol and brufen so didn't take them for a week! I now know after ringing the chemist that I can take them but of course the pain now has me well and truly in its grips.

I've read some scary stuff about gabapentin on the internet but am taking them anyway, I'm just so fed up of moaning about pain and will do virtually anything to ease it.

If anyone can share any self help in managing this debilitating condition I would very much appreciate it.

Many thanks for taking the time to read this

 

2

Blimey you have had a scary time. I wouldnt be convined its fibro. Have they done ANA test? If its pos its something else as fibro isnt an auto immune disease. Be careful, as they just diagnose fibro when they basically have no other diagnosis. Thats what I am going through now as I had pos blood test for ANA and my body just feels like its about to give up. I can hardly walk with my stick now as my hands, arms and shoulders are so weak and painful. It can just be a cop out for rheumatologists. Have they tested you for lupus? I only got a rash once out of nowhere on my back only, huge bumps but went after a couple of days. I went very hot and felt shattered when it started, but I dont hear of rash being part of fibro. Did prednisolone work for you? I was given it for one week only and felt great!

3

Where do you live? Your rheumatologist sounds as bad as mine! You should not have been discharged as there is obviously something awful going on! They really do annoy me! And can I ask why after just one meeting was he/she so convinced it isn't RA? Even with no rheumatoid factor in your blood test, it cannot be dismissed as at least 10% of people with RA have neg tests and it is based then on a clinical diagnosis. I would defo ask for a second opinion.

4

Dear Dee,

I feel so sorry for you but it doesn't sound like fibro to me, at least not as I know it.

The swollen joints sounds more like Also, in my experience the symptoms of fibromyalgia can  come and go and can vary dramatically within a very short time.

Do you suffer from any allergies or have you noticed any improvement in different places?

The other thing that interests me is if you've had a lot of anti-biotics at any time and if you have had any long term use of medication like tranquillisers and have stopped taking it.

Don't worry if you can't reply. I understand how hard it must be for you.

There must be an answer for you somewhere so keep hopeful.

best wishes

Brenda

5

Sorry Dee

The bit missing from my message was RA

6

Many thanks for replying Shazzy.

Interstingly abot 30 years ago I was hospitalised with erythema nodosm so consultant in hospital so thought it was sardoidosis as it seemed to tick all the boxes. That was also on rheumy referral but again she dismissed it with the hospital report from the january.

Consultant in January did lupus test and ruled it out, I've also been tested for addisons and that's been ruled out.

I'm also strugging to use my stick as my arms and shoulders are so painful  but the worst pain is my spine and pelvis,

I was on put on prednisolone while I was in hospital and stayed on it for for 6 months and it did help. The steroids I take long term (permanently) are fludrocortisone to keep my blood pressure at a functioning level

The rash I had which was more like hard blisters has ever come back though I have to take antihistamines now or I itch like crazy and scatch to the point I bleed.

7

I live in South Wales and GP never received her report so now, over a year down the line, GP went back last week and asked for the report from my consultation.

8

Hi I'm so sorry you've had such a torrid time. I myself know what its like to be gripped with pain but thankfully I have a good G.P. I now take 100mg of tramadol three times a day, 600mg at the momemt three times a day and co-dyramol three times a day, i cant take ibuprofen I get hives. It does take a while to get the right mix and hopefully with the right helpful G.P you'll get there.  Mel 

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Hi Brenda, many thanks for replying.

My level of symptoms / pain does vary and there are some days when I can function fairly well and though I'm never without pain somewhere when it does hit me bad it virtually immobilises me. It's almost like it races round each joint of my body and when I have a bad bout like now it takes around a week to calm down

I had oral antibiotics over Christmas 2012 and then 7 days IV antibiotics in hospital. Apart from 1 ear infection early this year I haven't had any other antibiotics and have never taken tranquillisers

10

Hi Mel, many thanks for replying.

The GP stopped my tramadol as apparently it's been reclassified....though why that stopped me having it I have no idea! Codydramol makes me so sick so I take 30/500 cocodamol and brufen. Hopefully something will eventually work

11

Dreadful treatment! How do they get away with it?! Its as though they think they can just put us all down to fibro and forget about us. Its not fair! I know lots of people with fibro who can get on with their lives, still work etc and dont need pain relief, so thats fine for them. What about those of us that take all the dangerous pain relief they throw at us to try to pacify us and still have no pain relief?! My worst pain is in my pelvis and has me bed bound a lot but  its getting almost as bad in my knees now. My shoulders are bad, elbows, fingers which also have nodules on them, wrists and feet. My back isnt as bad at the moment so thats something. My rash was also like blisters-my boyfriend said he couldnt believe it, it looked dreadful.

i dont think you should accept that diagnosis and insist on a different rheumatologist. I haveanother one friday. 

Take care x

12

Thats crazy, just cos someone decided to reclassify it doesnt mean it has changed. If it helped then you should still be prescribed it! Wow, I wish these people could have one day of our worst pain to make them understand! 

Dee you really need to see a different gp and dont hold out when you get there. Throw it all at them, its the only way they actually listen x