Fibromyalgia Advice

Hi,

I'd just like to ask some advice on fibromyalgia and what I should do in my current situation.

I've been told by a rheumatology specialist that most likely my health problems are fibromyalgia but that he "doesn't want to give me that label because it's seen very negatively in the medical community".

I've had health problems for years which were put down to IBS & the contraceptive pill I was on. After coming off the pill, these did lessen (about a year and a half ago). However over the past 10 months I've had increasing problems with: constant aches in my fingers, hands, legs, and shoulders, sometimes very severe pain the same places that renders me unable to do anything, exhaustion, migraines, nausea, and sometimes feeling very lightheaded/faint. I'm also very susceptible to pain and my boyfriend often pokes me playfully or picks me up and these things hurt when I don't think they should.

Sometimes only the aches are present and I'm able to work, sometimes I can't even get out of bed and a walk around the house makes me feel like I will faint.

My local doctor seems completely new to the condition. The specialist was very unkind, when I tried explain how I was struggling just to get through work he said "well we all have to do that" and basically told me to just live with it.

I don't know what to do. I'm on Naproxen and Codeine. I've tried Amitriptyline last week but I was violently sick and my doctor took me off it. He's now put me on Gabapentin - I took my first one this morning and fell asleep, but when I woke up I felt awful: the pain was very severe, my arms felt very heavy and like I couldn't even lift them. Not sure if it was the gabapentin or not. Is that normal?

I'm sorry for the long message, I just feel very desperate. I'm currently working and I'm ill all the time and close to losing my job. Every time I'm off ill I've had to loan money, which is getting me in debt. And I'm worried the doctors will never be able to fix it or help me.

Can you offer any advice? Is there a fibromyalgia specialist in Leeds that I could request to see?

Thank you for any help.

Jess

32 Replies

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  • I would request to see a neurologist. You might try lyrica. Or cymbalta. You can take them both at same time and they may help. Good luck and I am sure others will have suggestions. Hugs

  • Thank you, I'm going to see my GP tomorrow so I'll ask about those. I was going to ask to see a different rheumatologist - but you think I'd be better off seeing a neurologist? Is this to rule out more conditions? :)

  • My Neurologist knew more about fibro than the Rumatologist did, It is now concidered to be a neuro problem whereas in the past it was thought to be rumatic. hence the rumatologist.

    Please excuse tonights spelling,i amtired and fed up with struggling to get used to new glasses. :(

  • Aha okay, I'll try that, thank you. No worries on the spelling - I hope you get used to the glasses soon :-)

  • hello, This site will send a pack to your gp telling him about fibro. He wont know who sent it.

    Its a bit complicated for me to try telling you how to get the form you need but Ken will be on later and he will give you the web address that you need.

    My lovely doctor knew very little about fibro when i was first diagnosed, but must have been doing some research on his own. and he now listens when i tell him something new.

    Things will sort themselves out . eventually it just takes time and perseverance.

    We will always be here to support you.

    Hugs Sue.

  • Thank you. Do i have to specify which GP it goes to, or is it sent to the clinic as a whole? My usual doctor has been away a lot recently so I tend to see a lot of different GPs.

    Thank you for the support, it feels better having been able to talk about it. I'll go in tomorrow and see if my doctor is willing to refer me to the neurologist :)

  • Sorry i dont know, but good old Ken will, ooops sorry about the old Ken. Hugs to you all. :p

  • Haha, thank you again :) hugs x

  • I am here to help my friend x x

    PS. I am only 22 but I have had a hard life!

  • Really wow I honestly thought you were older! You are older in mind than body then! Very wise you are!

  • Can you get one of these packs for yourself as I would be very interested in reading it?

  • Just to let you know that the Medical Pack that has been so kindly mentioned by Mayrose can be obtained from Fibromyalgia Action UK just go to their car baits. On their browser you will see the different options and the second one is Information. If you scroll down you will see Medical Pack. Have a read and you will come to a point where there are links as and there is an online firm you can fill in with your Gp's details and then the pack if you like can be anonymously sent out to him or her. Hope this helps.

    You will also find excellent information on the same site about fibro, all its symptoms and different treatments both medical and more,alternative like acupuncture, hydrotherapy, etc. Many of us here use a mixture of these treatments to get some relief. Remember as you have found out what suits one dies not suit another so unfortunately it is a case if trial and error.

    The one I found helped the burning, shooting parts of my pain best was Pregablin (lyrica) and hydrotherapy was also good. Do hope you find some relief please let us know how you are doing and ask any questions as the people here are very kind and a font of knowledge.x

  • Thank you very much! I really appreciate all the advice & kind words. I'll talk to my doctor tomorrow and order one of the packs as well :)

  • Thank you, I had a reaction to the amitriptyline but I'm going to keep trying the gabapentin and see how it goes

  • Ahi my new friend , firstly hello ,and secondly ask to see a diferent rhumatolgist next time , that attitude went out with the arc ,fancy saying that to you .

    You have had all the best advice on here already , I am on dulexotine for my fibro I find it very good and it doesn't make my fatigue worse ,it works more like a stimulant ,

    Like most drugs they take time to work and stabilise and it's worth sticking with it for at least 3 months ,unless of course you vomiting .

    You might also ask to go on a pain and fatigue clinic ,it helps with exceptance ,understanding ,and pacing . If you can maintain mobility that's brilliant .

    You might want to contact social services for help with appliance to help you , and a disability advocate,to help with benifits and form filling and anything else they suggest you might need .

    I lost my job in July 2014 , if you follow the route I did let them let you go don't be bullied out and get an advocate and union with you for all meetings , you would then go on to ESA it's ok don't be scared you will be ok , to find advocate put your city or county name in search engine and disability advocate in and that should help . Also don't forger social workers be able to give you advice ring your local council and ask for adult social worker team , if you need any equipment also try physio dept at local health authorities you should be able to self refer , I was so worried about my job and with the help of the wonderful people on here I found so much help ,care and advice ,

    Try not to stress to much , eat healthy , watch your alcohol levels and rest when you need to only do if you have to pace pace and pace , see you here again I hope take care , be kind and gentle to your self .

    Christina 😘

  • Hi, thank you for all the information :)

    I'll write down dulexotine and mention it to my doctor as well. All the medicine so far does make me very sleepy...so something that works as a stimulant would help! I'll also ask about pain and fatigue clinic because that sounds really useful.

    For work, I'm not with a union, I work for a small software company and as far as I'm aware no one there is in a union. Do I need to be?

    Thank you so, so much for all the advice. I was feeling really low this morning but after all these replies & an idea of what to do I feel so much better, thank you :)

  • Second try to answer you . If your not in Union give ACAS a ring but you need copies of all meeting you have had someone should of taken minutes and you are entitled to copies for every meeting you have had , you should always have someone with you to represent you someone you can count on . Do you work full time or part time can you work from home ,is there anything they can do to make things easier for you ,these are all things that they should do for you .

    Get yourself an advocate you are disabled that does give you more rights , they will also have to get an occupational therapist to see what they can do to help make a things easier for you to stay in work ,

    Good luck

    Chris

  • Thank you Chris :) I work full time, they have never offered part-time and I've asked about working from home but they said no-- they take the view that if you're too ill to come to work, you're too ill to work. I'll look in to all of this- thank you very much!

  • Hi! Welcome. I was on Pregabalin and I didn't know what day it was after a while because of the side effects. I saw the Rheumatologist and she changed it to Duloxetine. No problems with that at all and does the business. I have acupuncture as well for the break through pain. Also I eat lots of vegetables, no dairy, lean meats and have cider vinegar and Manuka honey every morning.Cider Vinegar is not acidic and we threw all our other vinegars out and only use Cider Vinegar after I was told it goes straight to the joints causing more problems. Cider vinegar doesn't and has many properties. Remarkable what the right foods does for your body.

    I hope you improve!

    Thankful xx

  • Hi estellise

    I am so genuinely sorry to read that you are suffering and struggling in this way and I sincerely hope that you can find some resolution and relief to these issues. I have pasted you a link below to the FMA UK Website section on Requesting A GP Information Pack. They are sent anonymously so there are no worries for you:

    fmauk.org/information-packs...

    From what you have written it could be Fibro. However, please be aware that many other medical conditions mock the same symptoms as each other. For example, MS has similar symptoms to Fibro but MS can only be diagnosed after an MRI of the brain.

    You also mention that you are suffering financially? I was wondering if you have considered applying for PIP (Personal Independence Payment) which is a tax free benefit payable upon how your disability / illness affects your day to day life? As this is a tax free benefit you can claim this whilst working and it does not affect your tax status. It may be worth considering? I have pasted you a link to the GOV.UK pages on this benefit below:

    gov.uk/pip/how-to-claim

    FMA UK also have a dedicated benefit helpline and information service, the telephone number is: 0844 887 2450, and I have also pasted you a link to the helpline webpage below:

    fmauk.org/contactsmenu/help...

    I want to genuinely and sincerely wish you all the best of luck and please let me know if you need any further help and assistance.

    All my hopes and dreams for you

    Ken

  • Thank you! I'll do all that. I've also requested a meeting with citizens advice to see if they can tell me what benefits I might be able to get help from. Thank you again :)

  • I want to genuinely wish you all the best of luck with your meeting with the CAB, good luck!

  • Thank you :)

  • Hi Jess, sorry to hear your so poorly. Unfortunately fibro is considered a syndrome, its exact cause is unknown, people suffer similar symptoms but these impact more on some than others. Unfortunately this means there is no exact cure. People are on differing meds at different doses with differing success. As there is no exact test/cure it doesnt get the understanding it should.

    However not giving you a diagnosis is not helping you and its not helping fibro sufferers as its suggesting what we have is not real and i would challenge any disbeliever to try to live a day in our shoes and they would realise that noone would ever choose to be burdened by this hateful condition. We are the walking wounded, we have to work and carry out activities of daily living with pain and fatigue,

    Sorry to sound so negative!

    On the upside the sufferers are the most supportive and kind people you will ever meet, they are always on hand to help with advice, good humour and the belief that someday a scientific breakthrough will happen and fibro will be cured.

    Until then my advice is keep talking to you doctor there are lots of different treatments available. Fibro is made worse by stress, try mindfulness and pace yourself as best as you can in your work and daily living. I am currently reading fibromyalgia and muscle pain by Leon Chaitow,it might help you get a handle on how complex fibro is and there might be some self help tips for you.

    Take good care of yourself!😀

    Pam

  • Hi Pam, thank you for the help and understanding. I'm going to push my doctor to give me an official diagnosis, whether it means he diagnoses this or puts me through more tests I guess I'll find out :) Thank you and I hope you're well as well :)

  • Did the consultant rule out other causes for your pain? i.e. vitamin deficiencies, aneamia or even arthritis? I'm a bit annoyed to be honest that he wouldn't diagnose you with fibro and giving it such a negative connotation. To be honest, all the medical staff I've come across have been quite good about it and do believe in it - I find friends and family have problems understanding it... However, I would ask for a second opinion. It might be worth going to another rheumy or a neurologist - particularly as you feel faint. Make sure they've done full blood tests though to rule out thyroid problems. I really hope you get sorted re your job, are you entitled to full sick pay for a while? Fightback4justic.co.uk are also a good resource about claiming ESA etc.

    Try not to get stressed - in the end your health is all important. x

  • They ruled out anaemia and arthritis, they told me I do have some deficiencies - vitamin D, iron and folic acid. I'm going to ask them to send me to a neurologist I think, hopefully I won't have to go see the same rheumatologist anyway.

    I don't get full sick pay, just SSP. I'll take a look at that website, thank you, I'm very worried about my job! :)

  • I too had vitamin D deficiency last year, when I pointed this out to the rheumatologist, she dismissed it saying that most of the country is vit D deficient and it didn't account for all my symptoms. I do think vit D deficiency is linked with fibro and a lot of the auto-immune conditions - there's been some research on this.

    I really hope you get sorted. Have you tried entitledto.co.uk - that is a benefits calculator and can help you work out if you are entitled to any benefits.

  • The rheumatologist I saw said the same thing, that the vitamin D wasn't important and most people are deficient in it. I'm still on tablets for it luckily. I'll take a look at that website, thank you again :)

  • I think vit D deficiency can make you feel worse. I was hoping that once I'd taken the supplements I would feel better (a friend of mine had vit D deficiency and felt instantly better after a few weeks on the tablets) but unfortunately I didn't. I don't know if it sparked off my fibro and arthritis, but I'm not sure what else did - I haven't had any stress (not more than normal) or any virus/illness, accident - I keep looking for a cause!

  • Update

    I've been to see my GP - unfortunately it was a different GP this time - and he said I need to learn to live with it & that exercise is the answer. He did refer me to another rheumatologist but only reluctantly. He said to refer me to a neurologist for Fibromyalgia would be an insult to the neurologist who won't know anything about it. He also refused to send me to a pain clinic.

    My boyfriend now believes all I need to do is exercise more and I'll get healthy again. Not really sure what to do as I'm also due back at work on Monday and don't even think I can manage that.

    I'm going to ring work and ask again about working from home, see if I get any luck there. What should I do about the doctor? Wait until the rheumatology appointment comes through or try see a different GP?

  • I'd go and see the other rheumy to put your mind at rest. He's right in a way - a neurologist doesn't normally deal with fibro, although to say it's an 'insult' implies that fibro is insignificant - which it isn't.

    I'm not sure about the exercise bit. My doc told me exercise can help when you're having a bad day but it has to be a gradual build up. I find exercise can make me feel a whole lot worse and set me back. The key thing is to find painkillers that work for you.

    I'm on Gabapentin but it took at least a week to get into my system and begin to work. I find they are indispensable now with little side effects and they help me sleep at night. If they don't work for you, go back to your docs and ask for something different.

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