Hi

Hi there, newbie here. Interested in what people are saying about Fibromyagia and Polymyalgia. Diagnosed with fibro a few years ago, have seen a rheumatologist once and feel very unsupported however now have a gp that seems to listen but admits he is not a specialist in pain management. Everything on offer from pain clinic is during work time so i a unable to attend and yes I know I am lucky to be able to continue work but the rest of my life suffers for it. Have tried various pain meds but have settled with MST Continus with oramorph top ups. Still have the pain but it is more manageable. What help are people generally receiving from the NHS please?

12 Replies

oldest โ€ข newest
  • Hello there

    Welcome to the forum ๐Ÿ˜Š

    If you take a look at our website you'll find lots of information about Fibromyalgia on there fmauk.org

    I have had Fibro, ME plus other conditions for 36 years and am still learning about the condition.

    I suffer with severe pain 24/7 despite taking a cocktail of different meds.

    I don't actually know for sure, but my understanding is that Polymyalgia is widespread pain, whereas with Fibro lots of different symptoms make up the condition.

    The main symptoms with Fibro are obviously pain fatigue and lack of sleep but we all suffer from lots of other symptoms as well.

    Pain Clinics are really good. Would it not be possible for you to have some time off just to attend one appointment. You may then be put on a waiting list for another appointment for say an injection but would have to wait about 3/4 months for that appointment to come through.

    Pain Clinics tend to deal with the medication side and Pain Management Clinics may be six appointments which teach you to cope with chronic pain. This isn't always the case as with anything Fibro related it does differ from area to area.

    Have you tried Gabapentin or Pregablin? They are both good pain killers. Also Amitryptyline works very well for many people as it helps with pain sleep and low mood.

    As we are not medical professionals we can only speak from our own experiences of medications and cannot recommend any to you.

    Your GP should have a good idea of what to try you on. Perhaps you need to look for a different Pain Clinic?

    Once again a very warm welcome to the forum. I very much hope you enjoy it here.

    Wishing you a very Happy New Year.

    Lu x

    Administrator

  • Hi there Lu, thank you for your kind reply. Maybe we can chat in a couple of days after celebrations settle down?? Wishing you a pain free New Year x

  • Yes of course we can โ˜บ

    Let me know when you're ready and we can have a good chat through things.

    Happy New Year.

    Lu xx

  • Hi UsernameMe

    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 this and it is a shame that you cannot get along to the pain management clinic. From my personal experience I suffer most with fatigue and sleep issues as part of my Fibro, although I do have pain.

    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

    Polymyalgia is autoimmune disease

    Causing blood vessels in the large muscles to become inflamed causing chronic pain normally in shoulders .hips. and buttocks. Stiffness and pain is worse first thing in morning and after resting.

    Only certain way of diagnosing is course of Steroids if pain is gone within 24 hours likely to be Polymyalgia .

    Steroids will be needed for at least 2 years starting at 15 and slowly reducing

    Polymyalgia will eventually burn itself out but can return .

    Fatigue with Polymyalgia is often extreme so pacing and resting is very important

    Polymyalgia used to be a illness of older people but now many in their early 50s are being diagnosed.

    More common in females than males

    GPs don't know a lot about it .

    Serious if left untreated also can turn into GCA which can cause sight lose

    Rose

  • Thank you Rose that is the best explanation i have had regarding polymyalgia. I have an auto immune condition called ITP which is a blood condition and have had my spleen removed some 13 years ago to control it. I have only just recently heard of polymyalgia.

  • Hi

    I was the same its not until you may have it that you hear how many have it .

    For years I was told I had a virus and CFS it was only through perseverance I diagnosed myself and got GP to agree .

    I ended up having 4 months of work went sick in June 2015 could not get out of bed dress myself . Started steroids in Aug 15 returned to work full time in Dec after staggered return to work.

    Although I am working full time I come home and rest and take it easy weekends .

    Listen to my body I have a long way to go their is a PMR site on Healthcare Unlocked may be worth having a lock .

    One thing I did forget to mention is that pain is bilateral

    I have a underactive thyroid as well but many of us have other health conditions as well .

    Good luck

  • Hi usernameme welcome to friendly Fibro forum where you will get to know a lot of people with same as you plus other conditions

    I agree with Bluemermaid- Ken and rose54 - when I was reasearching why I had the pains I was having and in tops of my legs - I thought I had polymyalgia so asked the doc - that's when he said no you haven't got that but what I think you may have is Fibro - gave me an NHS print off asked me to look through it then get back to him - and I ticked off most of if not all the symptoms which I'd had for a long time but I put it down to my spondylosis ๐Ÿ˜ณ

    He started me on amytriptalene which I take 30mg that has helped enormously plus I am sleeping a lot better

    I hope you can arrange time off work to attend the pain clinic this will only help you in the long run - I don't attend any but apparently I have a high pain threshold - I was told this years ago and to be honest when I read others posts on forum I am very lucky as some Fibro friends suffer greatly

    Take care ๐Ÿ˜˜๐Ÿค— and wish you a very happy new year

  • Hi Toolie, thank you for the welcome. I am going to ask for a referal to the pain clinic again and to see the rheumatologist consultant again at my next gp review in a couple of weeks. I was on amytriptalene and codine but they both caused me to develop a very scary heart problem, thankfully it stopped after about 6weeks of having to instantly stop taking them, withdrawal wasn't fun๐Ÿ˜ฎ. Hoping you are having a good start to the year.

  • Glad to hear it - but sorry you had a bad reaction to the meds you were given - it's like anything I suppose what suits one won't suit another. I wish you well and hope you can find some relief from somewhere as pain isn't a good thing it affects everything you do plus your loved ones see you going through this.

    A mixed one really - I go to a slimming group and one of our ladies died suddenly on 28th Dec - our group yesterday was a sombre one - her son and daughter also attend and her son was so brave to stand up in front of us all and thanked us for the support they've received from everyone - what made it worse was his dad popped his head in he doesn't attend group and that finished his son and daughter and the rest of us too - but we now need to move on and carry on with our quest to lose more weight and obviously keep supporting her son and daughter. Hope this hasn't upset you and wish you the very best for the new year. Hugsnkisses on their way ๐Ÿ˜˜๐Ÿ˜˜๐Ÿค—๐Ÿค—

  • I am fairly content with the balance of my meds at the moment MST Continue and Oramorph with the help of an holistic therapist who does trigger point therapy and myofascial release massage. Also she keeps my lymph system free so I am very lucky but always looking for alternatives to medication.

    Oh my love what an awful thing to happen. Death is hard to deal with at any time but always worse at this time of the year. It is good you are all there to support the family and each other. Be kind to yourself and don't underestimate the power of your own grief. Sending healing thoughts and gentle hugs.

  • Thank you usernameMe. Best wishes for 2017. ๐Ÿ˜˜๐Ÿค—

You may also like...