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After 10 long years suffering today I was officially diagnosed with fibromyalgia advise needed.

Posted , 9 users are following.

dean150481
dean150481

after 10 years being told it's nothing but at same time putting me on tramadol for what I was saying so contradicting there selfs , then couple years ago telling me it was restless leg syndrome,today was a big relive to finally get the answer I knew all along by a great Dr who gave me one important thing his time and he listened today at the hospital I'm being referred to physiotherapy for help also to go in hydra pool and also acupuncture just wish it was sooner at times you just feel so alone .

4 likes, 29 replies

29 Replies

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  • Boqer
    Boqer dean150481

    Posted

    Well done to you for going through it all to finally get to a diagnosis, and I hope you feel a bit better soon with the therapy you are going to receive. I hear that the hydra pool can be good.
    • dean150481
      dean150481 Boqer

      Posted

      Thanks for responding to my post , it's been hard as I love my job but at times just carny get out the door , one thing I find that ease my symptoms at time is heat , a very hot bath even if it's 3. In the morning I'm awake anyway helps , so that's why they advised the pool I've read up about the acupuncture and I've read a lot of good things so will keep you all informed and its on the nhs I've also been told they are going to give me a  machine to help I'll get you name soon . Thanks take care 
    • Boqer
      Boqer dean150481

      Posted

      Yes, if hot baths help it seems the pool might work. I'm surprised you got those treatments on nhs, I haven't been offered anything other than antidepressants. I live in Wales so should be the same. Anyway, enjoy your evening.
  • sharon53053
    sharon53053 dean150481

    Posted

    Hello Dean, Never any need to feel alone here, lots of advice and kind words of support available, I would really be interested to know how the acupuncture and hydro pool go, Gentle hug to you.
    • dean150481
      dean150481 sharon53053

      Posted

      Hi thank you for taking the time to respond it's good to know your not alone even thou my wife is great and has been there she just doesn't no the pain and how bad it feels of course I'll let you know as soon as I've had the treatment the acupuncture is meant to be very good for fibromyalgia take care .
  • leona18728
    leona18728 dean150481

    Posted

    Hi Dean, so pleased your being taken seriously, I've had a few weeks of hydrotherapy and found it fantastic, it did make my wrists really hurt at first but when everything hurts like us we tend not to use our joints in a different manner and tend to stay in our comfort zone,

    I'm about to start another couple of weeks soon and can't wait,

    I'd recommend it to every fibro sufferer,

    Keep us informed on how you get on.

    • dean150481
      dean150481 leona18728

      Posted

      Hi Leona 

      thanks for taking the time to read and reply to my post , the hydra pool I hope and believe will help I've read up on the acupuncture they have offered and all the notes I've read up on is all positive and is meant to be a get relive for fibromyalgia I will keep you informed take care .

    • leona18728
      leona18728 dean150481

      Posted

      Good morning Dean,

      I paid for acupuncture myself I went every fortnight for a year I loved it I felt very little pain in my joints or muscles and felt more energised generally, but unfortunately I couldn't keep up the expense,

      Apparently I can have acupuncture here in my local hospital where I have hydrotherapy so I'm going to ask about it,

      Diet for me makes a huge difference to my daily living

      Ive given up gluten and only eat fresh home made food it's more expensive but worth every penny now I understand the benefits of how it makes me feel,

      I also take magnesium every day I find this a big help to although there are no medical evidence that magnesium helps fibro it's trial and error, on a really bad day I use magnesium spray oil on my joints this really works for me and it's not another chemical tablet into my body with other side effects,

      Hope you have some ideas on here that helps you,

      I've hade fibro for ever I think 😏 well over 16 years and SLE for over 20 years and I'm still learning

      But I find keeping active even on my worse days help me recover from flare ups quicker than going to my bed even if it means dragging myself to work I still go I function on auto pilot most days and have learned to laugh at myself for the stupid things I do and say, it can be embarrassing especially I'm the middle of a ward round with consultants, I just say o well it's my fibro fog day and we all laugh together

      It gives me a sense of achievement after I've done something when I really feel I can't

      We are all different and I know I have a very strong mind

      But I hope you find a way to start living a good life with fibro, Fibro is not your life,

      Have a good positive day.

      Leona.

  • kaz_40
    kaz_40 dean150481

    Posted

    Hi Dean so pleased for you that you finaly got a diagnoses. it took me 10  years to get diagnosed.You wount feel alone on here we are here to help support each other through it. Your gp will try you pain killers some will work others may not your gp can also refer you to apain clinic. thats where they help you with the pain. I tried accupunture it didnt work for me but we are all different what works for 1 person may not for another person. you will find its trial error on alot of things with fibro its finding what helps you what doesnt. get as much help support as you can. and also some aids to help you eg walking stick walking frame anything that will help you in your daily life.you have joined the fibro family so you will never feela lone we are all here to help support each other. take care gentle hug  
    • dean150481
      dean150481 kaz_40

      Posted

      Evening Kaz 

      thanks for taking time to talk , I saw the pain clinic two years ago even thou my dr didn't thing I had anything in particular so he contradicted hisself by sending me there when there they said I had restless leg syndrome and put me on lidocaine patch and gababentin which didn't touch me , I've been on mst tablets for about 6 months and also oramorph which today the rymatolagy Dr wasn't happy I was on so has put me on new mess so will see the main thing I find helps me is heat ie a really hot bath I have a bed with built in massarge and heat pad , I'll let you know how my treatment goes take care of yourself thanks again .

    • kaz_40
      kaz_40 dean150481

      Posted

      Hi dean I find heat helps me also, I wouldnt be with my hot water bottles and wheat bags. Im not on an medication had severe reactions to the tablets and pain patch. so just use hot water bottle wheat bag grit my teeth. My hands back legs are very painful today I feel shattered I was up at 6.30 I needed a drink so got up. Hope treatment goes well for you let us know how it goes. we are all here for each other take care  
  • derek1979
    derek1979 dean150481

    Posted

    your not alone my friend i to have had it for years its horrible just thought i would drop you a message to find out what its like for you as from a mans point of view its very hard for me to deal with just woundering how your coping with it
    • dean150481
      dean150481 derek1979

      Posted

      Hi Derek 

      thanks for the message tbh at times it's hard very hard I've been put on antidepressants a few times as my dr sees me struggling, my wife helps a lot but it's hard at times to explain to her how bad I'm feeling at times crying today has been a long time coming over 10 years struggling with no diagnosis until today the hydra pool I'm looking forward too has heat is the one thing that does help me my wife can run me a bath at 3 in the morning if I'm really bad and it does help at the minute I'm on 60mg mst and oramorph I worry being on them as I'm only 34 so worry how going forward with men's is going to be its good to know their is other men out there as it seems women is the main affected take care Derek .

    • shirl21730
      shirl21730 dean150481

      Posted

      Hi Dean it took me 10 years to get a diagnosis as well I was told and treated for ibs I have chrons/colitis as well as fibro....I did a course of 12 weeks in a hydro pool it felt so nice being in the warm water you do light movements to help build your muscles up there were other people with ankylosing spondylitis who could hardly walk and bend it made me feel I was one of the luckier ones and was enough to spur me on to want to do more for myself...from there I was able to go on another course of 12 weeks under supervision in a gym to strengthen arms and legs with low impact Aqua aerobics and swimming ask see if this is available in your area you are very young and would feel the benefits I did... good luck 

      shirl

    • christine26761
      christine26761 dean150481

      Posted

      I forgot to say I totally agree with Shirl too...on the hydrotherapy...I do.it regularly sometimes only once a week......just do what they taught me at

      the hospital...I do it in the local Resorts warm swimming pool, I had to join their health club-(gym) but I have access all the time..I sometimes only can slowly walk up and down but it has great effects...:-) xxx

    • dean150481
      dean150481 shirl21730

      Posted

      Hi shirl

      thank you for your advice it is most welcomed I will look into what is available I believe the hydra pool will be great help , and aqua aerobics as well , will let you no how I get on take care .

    • kaz_40
      kaz_40 derek1979

      Posted

      morning derek how are you today? hope your not in too much pain. stress worry make our condition worse. The more stressed we get the worse the pain gets, when your in pain try focus on something other than the pain, just try relax. The only thing that I have helped with a bit is heat, my hot water bottles and wheat bags get alot of use. all we can do is take a day at a time and get through the day as best we can. battle through it easier said than done at times, but weve got no choice in doing any other. Hope your wife son are both ok. take care gentle hug my regards to sharonsmile
    • derek1979
      derek1979 kaz_40

      Posted

      i have tried all that and it just seems to make me feel worse but its when i take my mind off the pain is when it gets worser so and thanks there ok just wish we was cause its horrible having to put up with this every day but we have no choice in the matter we just have to deal with it the best we can but it is esier said than done and only people like us can truely understand what its like but hope your not to bad today and gentle hugs to you x
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