CFS GP advice & general experience

[Simmeke83]

Good evening

I have just joined this forum and looking for some advice on how to approach a new GP I will soon have to visit. I have been told by my previous doctor I have fibromyalgia and CFS. I been through some course of various antidepressants none of which helped long run, made it worse actually. If they did for fibro they made me a zombie and vice versa. After several attempts we decided to give up on them which was a funny period of my life coming off them. Never again would like to feel this way. Anyway my CFS seems to be much severe recently than fibro. Yes I am in pain but my fatigue is unbearable. I fall asleep everywhere anytime. Although nights before work are full of anxiety so not so much then. I cannot live like this anymore I have been for most of my life without knowing what it is and now in my 30s it's getting worse and I am scared. What I would like to know though is I have never been referred to any neurosurgeon nor pain management clinic or anybody else apart from GP that could help me more. I have been told that apart from the antidepressants and CBT (which I did as well) there is nothing else they can do for me. Now I registered with new surgery and I'm stressing that I will get a doctor that will not believe me that I have so many pains and problems and I will be stuck again. I do get quite shy when I have to talk about those things and feel guilty that doctor has to deal with complicated case like mine. Please can you give me any advice how to approach this so I can get anymore help? Also your experiences if you can share and how you manage with such tiredness all the time trying to work and live. Thank you. Kami

[Janet28]

Hi Simmeke83 Welcome to our wonderful forum, I'm sure you will love it and find it invaluable chatting to others who are going through the same as you, at different stages of their lives with fibromyalgia7.

I must admit it's very difficult to get medication right that works for you and takes a long time. I would suggest you write a list of all your symptoms and even write a little diary of how you feel every day for a few days & show the gp when you go. Then let them ask you questions. I've got a feeling you can refer yourself to a pain clinic, but don't take my word for it cos I'm not completely sure, I know you can refer yourself for physio, you just call them. Write these things on your list to give to gp. There is definitely more that come be done to help you, there is more medication you can take that will ease all your symptoms. Amitriptyline Is quite often given to help fibro symptoms, if taken very early evening, it helps you relax and helps sleep & mood & muscle spasms, so is a good all rounder. Usually Gabapentin or Pregablin are also prescribed to block the nerve pain. I hope this helps a little.

Please do go check out the mother site fmauk.org where you will find lots of useful information and links on fibro and I look forward to chatting with you on the forum

Peace, luv n light

Jan xx

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[Ramjets]

Hi Kami, I am sorry to hear of the difficult time you have been having. I can offer you the benefit of my experience and the knowledge I have acquired as a result which may be of some help to you. Firstly, have you already been allocated a specific GP in your new practice? I know on my GP's website they list all the doctors and their particular area of interest or expertise. So it may be an idea to check yours out to see if there are any that have specific fibro or neurological experience as this will make things easier from the get go. Also before your appointment, I would write down all your symptoms and how they affect you so you don’t forget anything. Then if you do find it hard to talk when you are with the doctor you can just hand them what you have written down rather than struggle to explain.

You mention your previous GP told you that you had fibro but to the best of my knowledge it is usually a rheumatologist who makes the diagnosis (or neurologist). Also you haven’t mentioned if you have been tested for any other conditions that have similar symptoms to fibro. A fibro diagnosis is usually reached by a process of elimination when every other possibility has been ruled out so consequently can take some time. Therefore if this has not already occurred, you should ask your new doctor to start the process of properly investigating your symptoms. If however you are at the stage where all other avenues have been exhausted then I would ask your doctor to refer you to a rheumatologist so fibro can be considered. If they are reluctant, explain that you need to see a specialist to help you because of the detrimental affect your symptoms are having on your life. If your GP refuses then ask them to explain exactly why a referral is not appropriate. If you are not satisfied with their explanation then ask that they put on your medical notes that you have requested a referral because you are suffering with your symptoms and need to see a specialist for help but that GP has refused this request. GPs can only refuse a referral if they have a genuine clinical reason to do so. Asking them to officially justify and record their refusal may make them think twice.

Please don’t be intimidated by the doctor or feel guilty as it is their job to help you and provide you with the best possible care. You don’t need to be pushy or rude but just politely request what you are entitled to as a patient. It would probably help if you could take someone with you to act as a chaperone and give you support, as this may make you feel more confident.

If you finally do get an official diagnosis of fibro the rheumatologist can make recommendations so you can discuss with them, and subsequently your GP, the best way to treat your condition.This may involve different medications, physio, pain clinic etc.

In the meantime welcome to the forum. I am sure you will find it as friendly and supportive as I do. Take care and good luck lovely.xxx

(Sorry for long reply but hope some of it is of some use to you).

[Telynores in reply to Ramjets]

Lots of good info so I will just add that a GP may be listed as having interest/experience in musculo-skeletal problems. They would be a good one to begin with.

Also, having been through a move and change of GP last year, it may take a while for all of your information to be transferred therefore they may be reluctant to change your treatment immediately.

As Ramjets has said, if you haven't seen a Rheumatologist or been to the pain clinic before, you are entitled to ask and be referred to these specialisms.

I was really worried when having to move GP but have a gem who books me in for a double appointment every 4-6 weeks. We can fall on our feet

Be good to yourself

[Hidden]

Hi Kami- I understand how you feel, some g.p,s know B*** all about fibro, I have used hydrotherapy for many years, maybe put together a word document like I did, take it with you so that you don't forget anything important, state the worst day scenario and ask about being referred to a specialist physio who will assess your needs to combat the fatigue..It will take time, pills are not for everyone (I couldn,t use amitrip, gabapent and pregab-absolutely awful drugs) but they work for others. I kept my word doc, it helped wen filling in forms for ESA/PIP.. Stay with us you will get lots of tips from colleagues on the forum here.

[Simmeke83]

Hello

Thank you all for your replies and advice I'm sorry I haven't replied for a long time had my parents visiting and a lot of work in the house done. I have my first visit to New GP next Wednesday and I think I am going to take my partner with me so he can talk to her about my depression as well which I find extremely difficult. Starting my list of symptoms and will take it with me. Last three weeks been feeling exceptionally bad with sore throat ears infected etc Today on the verge of sanity of how to keep my job and push myself through the days to come. It became so difficult. I am scared I'm going to have to take a sick leave and then will loose my job. I haven't had long sick leave apart from two to three days off top maybe every 4 months or so but feel like I won't have much choice soon if I don't feel better. Will keep you posted how my go went hoping you all feel better today.

Kami