App with rheumatologist

[birkie]

I had an app with a rheumatologist yesterday about fibro pain and neuralgic pain this is the first time I have seen a specialist. I have had the condition for over ten years and also have ME...I was rushed to hospital with server stomach/bowls/throat inflammation diagnosed with a absorption bowle prob and H piylor... after talking about my pain I asked if it could be auto immune prob as my endo diagnosed thiyrositis I was attacking my thyroid could I be attacking my muscles ect..he promptly told me their is no medical evidence for auto immune and he promptly dismissed it as he did when I mentioned LDN..he looked at me like I was an alien...waved his hands and said let's deal with your pain...here's the best bit of advice I've ever heard... he said if I get a good nites sleep my fibro pain will eventually go..then he rambeled on about sitting in a chair all day and how you can become stiff!!!! Then he examined me then said I had wear n tear... and again like most NHS consultants/ specalicts/ doctors he as prescribed me painkilling drugs three in total..two of which make you drowsy.. then he went on to say I need to do excersis...I told him I do!!! I do gym ball for my muscle strength but having a illness that fatiques you is very hard..and you now want to put me on two drugs that are going to make me DROWSY!!! He then said HO if they make you drowsy don't take them!!! So how do I deal with the pain???? He then said...fibromialgia is not life threatning... DOH!!!!! I know that'''but its flipping painfulll!!!!! However he did take blood and did x rays on my wrists...so I'm now waiting to see what comes of the results!!! But came away very ... I won't say depressed coz I'm not just angry with the treatment I'm receiving from the NHS...

Birkie

[Barrister]

Well we all know that having an auto immune disorder predisposes us to acquiring more auto immune disorders so he's got that wrong for a start. My GP told me that, mind you I have an exceptional GP ( in Saudi Arabia of all places!) Whenever I am treated by the NHS I am always left very despondent. They are too quick to poo-poo us. Hopefully your bloods and X-rays will come up with a reason for your pain. I have PsA and spondyloarthritis and lymphocytic colitis ( all autoimmune disorders) and have just experienced the worst pain I have ever been in in my life due to a flare of the arthritis so I do understand your problems and whilst I wouldn't wish any of these diagnoses on you, I do hope that you can get to the bottom of your pain. Clemmie

[birkie in reply to Barrister]

Hi barrister

Thanks for the reply I don't think my app with the rheumatologist was very productive,and after being on diyhidrocodine for over ten years and feeling like a zombie I was rushed in to hospital with server inflammation of the colon/stomach/throat my white cell count was very high.no colitis was found diagnosed with H pilory and bowle absorption probs.my Castro consultant advised me not to take anymore diyhidrocodine as they are addictive I have now been off them since the 6 Nov was prescribed steroids for my colon/stomach they took some of my fibro pain away but now all my pain is back.I don't want to feel like a zombie just want my life back without all this pain I'm sure their must be a drug that can help with pain and does not make you feel zonked out.its not a good drug to be on when you have a fatique problem it just makes you feel worse what about the quality of life!!! I have no social life now and only go out when I have to

Life sucks!!!

Birkie

[birkie in reply to Barrister]

Hi again barrister

You were saying you had a bad flare up of arthritis and you were in the worsted pain you have ever had..I hope your feeling better but it reminded me..a couple of years ago my left leg blew up to twice its size and the pain was unbearable my son called the doc out he diagnosed me with an arthritic episode to be quite truthful I didn't know what that meant..but I did have surgery on my left knee for server swelling..when I came round the consultant told me my knee was 75% arthritic I would need a new kneecap but I was to young I told the rheumatologist this I think he must have been asleep because he never commented or examined my knees properly he just felt them through the thick tights I was wearing. Hope your felling a bit better..not holding my breath on the blood/x-ray results!!!! Lol

Birkie

[Tessica]

Hi, I am in very much the same position myself. Diagnosed with fibro and hypothyroidism myself about 20 years ago. Recently got a referral to a Rheumy and like you tried 3 different drugs. I could not tolerate them as felt doped and could not drive. I work so that was not an option. Sadly I think you will find that there is nothing else on offer. I now think that on my case it is better to pursue correct treatment for my auto immune problem which I dont feel has ever been managed properly. In myself I think my fibro is caused by this problem. Also I know that many Gps still do not believe in fibro and go through the motions doling out heavy painkillers and anti d's. All the best. I hope you get the help you need 🙂

[birkie in reply to Tessica]

Hi tessica

I to think my fibro pain is auto immune my endo diagnosed me with thiyrositis I was attacking my own thyroid.I know that is auto immune... but the rheumatologist dismissed it,, as I said he says their is no medical proof it exists I'm not going to take the meds if they make me drowsy you can't operate in daily life feeling like that.I now no longer work as my conditions affect me so much..I feel I'm missing out on life if these drugs don't agree with me I don't know what to do next...my house is going up on the market at the end of the month as I can no longer manage it I have slept downstairs for over two years..hopefully when it sells I will have some money I'm thinking of paying to see a specialist in London I'm so desperate to get my life back...the NHS don't seem to be helping me they just want me druged up AGAIN!!! Then they complain when we become addicted to them..can't win with the NHS....i hope you are managing with your pain..i know how you feel...pitty the doctors dont!!!!!

Birkie