I have just finally had a diagnosis of fibromyalgia

Kerryw82
Kerryw82 Member Posts: 2
edited 19. Jul 2019, 11:11 in Say Hello
I have been poorly on and off for years, I already have severe psoriasis and underactibe thyroid, which are auto immune diseases. I was also diagnosed with chronic fatigue years ago. I’m now 37 and I feel like I’m declining quite fast. Does anybody else have anything they could share with me as I’m feeling pretty overwhelmed by it all.

I’ve had to give up work, does anybody else claim any benefits if you have fibromyalgia?

Kerry xx

Comments

  • [Deleted User]
    [Deleted User] Posts: 0
    edited 30. Nov -1, 00:00
    Hi Kerryw82,
    welcome to the forums it is lovely to meet you. I am sorry to hear that you have been having a rough time and I hope it is good news for you that you now at least have a diagnosis. As you will be aware living with a ling term condition is not always easy. You might find our information on Fibromyalgia useful here https://www.versusarthritis.org/about-arthritis/conditions/fibromyalgia/ it includes Maria's story. We also have a section on benefits that you may find handy https://www.versusarthritis.org/about-arthritis/living-with-arthritis/financial-support/
    I am sure our members will make you feel very welcome and give you lots of information on their experience
    Best Wishes
    Sharon
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I too have fibromyalgia alongside psoriatic and osteo arthritis. My fibro is active at the moment, and has been for three months so far, whether that is due to a change of medication or just because it can I don't know: neither do I care. It's here and has to be dealt with, end of.

    I am fortunate to be older than you (I am now 60) so my working life is behind me but with that I was also lucky in that I was self-employed so I could tailor things to suit myself. The only benefit I have claimed was DLA (now known as PIP) and I am going through the process of proving I am qualified to receive that so I cannot help on that front either.

    There is not much to be done medically for fibro but self-help is key. The difficulty with that is that one is already flattened and unable to summon much enthusiasm for exercise etc. but it can make us feel better within ourselves, albeit briefly. I often wonder if CF, ME and fibro are all one and the same thing but I am not a doc, they share many of the same characteristics though, don't they? I force myself to go for shirt walks which, with my shot joints, is far from fun, but it does life my mood. I also exercise indoors with my post-operation physio stuff and some light weights. Again that causes more pain but I have to keep my muscles as strong and flexible as possible to better support my joints. Personally I have found that diet makes no difference whatsoever but I try to keep my consumption to processed food to a minimum for the sake of my over-all health.

    I began my psoriatic arthritis when I was 37 (I was born with eczema and developed asthma aged 7) but it didn't begin where it traditionally does and I didn't have any psoriasis. Have you event been checked for that? I ask because an auto-immune inflammatory arthritis can also make one feel very lethargic, I think there are a few on here with thyroid troubles too - conditions can and do overlap. DD
  • daffy2
    daffy2 Member Posts: 1,636
    edited 30. Nov -1, 00:00
    I force myself to go for shirt walks
    Tucked in or hanging loose DD?
    I shall be doing the latter today as I'm at work, it's hot, and the uniform polo shirts are easy-care rather than easy-wear - high polyester content.
    And yes it's hard to exercise when the fibro(and everything else) is kicking off, but being at work solves the motivation issue(lack of rather)for me as there is a lot of walking to be done. On the plus side when I collapse at home at the end of the day I can at least reflect that I've been paid for inflicting suffering on myself!
  • Jayuk
    Jayuk Member Posts: 24
    edited 30. Nov -1, 00:00
    Hi I feel your pain, i have under active thyroid (auto immune disease) and firbromyalagia. Have you had your b12 checked as this could also be low as I have b12 and folate deficiency, just been diagnosed with start of Osteoarthritis of the knees. I still find it hard to understand it as everyday is different and I'm still working which I'm really struggling with. I can't help with benefits but just wanted to reply as it's so hard coping day to day.
  • Jackie47
    Jackie47 Member Posts: 108
    edited 30. Nov -1, 00:00
    As Fibro doesn’t have a medical test ,so signs and symptoms are a guide. None the less pain is pain whatever. I think once you know what you’re dealing with it’s a step to getting the right treatment. I have RA and Fibro but don’t know where one starts and the other ends. I had a acupuncture which helped
  • WayneMW82
    WayneMW82 Member Posts: 1
    edited 30. Nov -1, 00:00
    Hi kerryw82, I can relate to your frustration im also 37 I have had RA for 20 years and had to undergo surgery at least 6 times over the past few years and I find it hard to cope with the situation at such a young age i find no matter how much you explain what it's like to people they don't really understand it can be hard at times no matter how many people you have around you it's still feels lonely when you are in so much pain x
  • Jackie47
    Jackie47 Member Posts: 108
    edited 30. Nov -1, 00:00
    Yes Wayne i know where you're coming from. If pain isnt enough just discovered Dr didn't refer me to Orthopaedic's in May. So now she has via MATS.🙄 This year has been really hard.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello waynemw82, it's nice to meet you and I am sorry you have had to find us. People think they know what arthritis is but nobody understands any condition until they have it. Having been born with auto-immune issues I was always a candidate, I began aged 37 and am now 60. Oddly it isn't getting any easier :lol:

    I hope you find the forum to be of interest and please add to any thread you fancy, new voices are always welcome. DD

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