Newbie who needs help :)

Good afternoon over the past few years I have had many aches and pains cartliage removed from my knee slipped disk in my back repaired ongoing spondylitis and for the past 18 months the diagnosis of RA so I have been on the steriods and the mexatrate etc...... then last monday saw the RA registrar who afer chatting through my symptoms announced that I have fibromyalgia. Gave me a booklet to read discussed doing aerobic excercises, speak to my GP about pain mesdication but where possible should look to come off them! announced that a couple of years ago I would probably had been referred to a piain management consultant for steroid injections but they have now come to the conclusion they do not work said goodbye and see you in 6 months............ Well it has taken me over a week and thre days of work with immense pain, fibro fog and an upset stomach to try and get my head around tghis. I feel that they have put all my symptoms that they cannot treat in a box and named it fibromyalgia!! I now have the stress of telling my employer who I know will not show any compasion as we have no HR and only 5 employees... I am worried for my health/job and sanity not sure what to do next and would welcome any guidance or help.....

6 Replies

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  • Hello Bellydot

    Welcome to the forum :) I feel sure that you will be very glad that you have joined a group of people who completely understand how you are feeling right now.

    Do you mind me asking whether you know if you have been tested for Lupus or Lyme Disease?

    The symptoms can be very similar. If you take a look at our mother site you will find a list of common symptoms with Fibromyalgia fmauk.org

    If you are seriously doubting your diagnosis, please could I suggest that you ask your GP for a referral to see a Rheumatologist that specialises in Fibromyalgia?

    I have been a member of this forum for 5 years, and was diagnosed with Fibro, ME, HMS, PTSD and depression in 1980.

    I did manage to work through the pain and fatigue for 34 years, until several huge traumas put paid to my working life.

    Fibromyalgia comes in many different guises and we all suffer to varying degrees. Some of our members are able to manage their symptoms and carry on with a fairly "normal" life.

    The way you are feeling is completely normal. I have seen so many people say exactly what you are saying. They feel confused and don't know what the future holds.

    My personal advice to you would be to take a deep breath, try to calm yourself down and when you feel ready, learn as much as you possibly can about Fibromyalgia.

    The majority of us here were diagnosed, given a leaflet and then discharged back to our GP's.

    Are you taking any medication at the moment? If not, your GP should know what to prescribe you with.

    Everything Fibro related takes a long time, so you will need to learn to be patient. Not at all easy I know. Finding the right set of meds that suit you personally can take quite a long time.

    I would definitely not suggest that you do any aerobic excercise! Gentle stretching is what I would think would be better for you.

    I am sorry, but I strongly disagree with quite a lot of what you have been told. It is true that due to lack of funding Pain Clinics are closing up and down the country.

    However, steroid injections are still being given for pain and do work (they certainly have worked for me anyway).

    I don't want to swamp you with too much information in one go.

    It may well be that once you have found the right meds and gentle exercise that you will be able to continue with your job, dependant upon what your job is.

    I very much hope that some of this helps you. If you have any further questions, please do ask away.

    If you need any help navigating the forum, please don't hesitate to give me a shout and I will be more than happy to help you.

    Wishing you less pain and more peace

    Lu x

    Administrator

  • Thank you so much for coming back to me . I have not been tested for eith Lupus or Lyme disease but looking at their symptoms I believe that Fibro is probably correct as it is like reading about me when I review the booklet I was given its just a bit of a shock.

    I will make an appointment with my GP once I know he has the letter confirming my diagnosis otherwise it would be pointless going. I am currently on Gabupentin whuich I am not sure if it is working or not? having taken it so often over the last 6-7 years I believe it helps but I also have to take co-codamol or tramadol to ensure I can get thriough some days when the opain is so uncomfortable.

    Patience is something that I am not very good at! but gues I am going to have to learn quickly if I want to live with this condition.... My job is desk based with a 50 mile drive each day all things that do not help my condition!

    Once again thanks for your kind words

  • You're very welcome ☺ I just wish I could have given you better news.

    If you do have severe pain you are best off taking the Tramadol regularly so that it can build up in your body.

    Try taking some paracetamol the same time as the Tramadol as that boosts the efficacy of the Tramadol. However don't take the CoCodamol at the same time.

    I do have to point out that I am not a medical professional but just speaking from my own experience of these meds.

    Are you on the max dose of Gabapentin? If not it would be worth discussing that with your GP too.

    Lu xx

  • Welcome to the fibro forum. So sad to read your post as it is the story for many of us on the forum. You start off with one illness and then over the years add others but somehow cope then the pain starts to become strange and attacks random parts of the body and for time you took think you are going mad and then if you are lucky you get a diagnosis.

    Unfortunately most of the medical profession then puts every new symptom down to the dreaded fibro and more or less says this is your lot go away and live with it which is so dispiriting. I lost a job I adored and had done for many years because of it

    Many medics are of the opinion that steroid injections have limited effect on fibro. I was permitted one in my hip and for 6 months in that area it was like a miracle cure but the OT said she normally wouldn't contenence it for fibro but took pity as I was in so much pain.

    Have you had chance to look at our mother site Fibromyalgia Action UK as it has a section on medication but also other ways of helping yourself and includes some alternatives like acupuncture. I have been paying privately to see a Chinese medicine/acupuncturist practitioner and he has certainly helped my hip and a horrible boring pain I was having in my back. He has also given me other good advice about pacing, exercise etc. Hydrotherapy is good and I asked to see a physio who referred me and also for needle acupuncture and gave me some exercises which certainly helped me walk further.

    Have you asked to be referred to a PainManagement clinic as some people have found great help through them. Unfortunately it seems to vary feom region to region what help you get.

    I look forward to your future posts.x

  • Hi Bellydot

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of your experience RA Registrar, and as the others have intimated it may be best to talk to your doctor about this to ascertain what they can do for you?

    I want to sincerely wish you all the best of luck, and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Hi Bellydot welcome to the forum - as you will see there is loads of support on here and a great admin team to guide you.

    I am sure you will be inundated with welcomes once the Fibro fog has left some of our Fibro friends. Hope you get your meds sorted out soon. Take care 😘😘😘

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