I would love to know your thoughts on 2 questions that buzz around my head

Question 1 Have you put on weight since your diagnose?

I have put on over 2 st what with meds and no proper exercise I find it hard to stay at this weight never mind loosing any. I do stretches and get a walk when I can.

Question 2 Have you ever been told fibromyalgia is not a diagnose.

I was by a student dr while my rheumy was in another room. I was also told by a close family member that it's not a proper illness.

My two questions thanks in advance to anyone who takes the time to answer.

9 Replies

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  • Yes to the first question , but only since arthritis joined the fibro so my gentle exercise has gone to practically nothing...

    No to the second .. I guess I am lucky have had it 23 years and have never had a negative response from the medical profession or family , though my mother didnt realise I was as bad as I am,

    As for taking the time to answer ... My pleasure

    VG x

  • VeryG I also have arthritis and lupus so between them all exercise is very difficult. You've been very lucky with the medics and your family my rheumy and gp are quiet good with their understanding of fibro so I'm lucky there. Again thanks for answering.

  • Hi,

    I empathise on both counts there. I have put on weight and am often told losing weight would help with my fibro. But when you have such limited mobility it is very hard to lose any.I barely eat due to sickness from medication and I am still lucky if I lose a lb a fortnight. I get quite cross when people suggest I lose weight! "blimey, i hadn't thought of that!"

    Shortly after my diagnosis of fibro I was also diagnosed with rheumatoid arthritis and I see the difference in people's reactions. Tell someone you have fibro and they give you that sideways look that tells you they think 'just getting off your arse' is the cure, but tell them I have RA and they are full of sympathy and helpful suggestions! In reality, I don't know which pain is fibro and which is RA so I certainly wouldn't say one is worse than the other (in my opinion).

    The brilliant thing I've found with the forum is that people here really understand what fibro does to a person, body and mind! I graduated uni with a 1st class degree only two years ago, but now I can't even concentrate long enough to write a shopping list! (This has taken me several proof reads to make it make sense lol)

    I'm rambling. Sorry.

    Siân

  • Sian, your not rambling at all. I have lupus and get the same response as you when I tell people I have lupus I get the concern but as you said tell them about the fibro and well....

    I also don't know which pain or brain fog is coming for what. The symptoms from both are a lot similar. Just feeling down to night but I'm glad that I'm part of this community where understanding and support flows.

    Again thanks for taking the time to answer

  • "Fibro is only a "wastebasket" diagnosis when doctors use it as such, giving the diagnosis to the patient because they simply do not know what it is wrong."

    This is a quote from this old article on the main site:

    fibroaction.org/Articles/Be...

    Fibro is a very specific condition, involving central sensitisation as a result of over-stimulation of the Autonomic Nervous System and the impact that has on the brain (disrupted stage 4 sleep, reduced dopamine available in the brain, changes to the amount of grey matter in part of the brain). Unfortunately many doctors still don't realise that and being newly qualified is not always a help as some textbooks are still ridiculously out-of-date.

  • yes i have put on alot of weight due to meds and not being able to walk alot and yes i believe it is an awfull illness . some people don.t understand unless they have it themselfs and as for my brain it never works right <i need a new one .> take care and gentle hugs

  • I have fibro, lupus, spina bifida, APS, sjogrens, raynauds... but apparently its nothing cos its not like I have cancer or anything... I was also fine earlier/yesterday.

    Weight. Well now I was diagnosed 20yrs ago, 8yrs undiagnosed I was skinny as a rake, with meds & disease progression I have gained over 12st. It goes way up, comes down a bit, sky rockets again.

  • Nanunk, we most have posted together. Sorry to hear you have so many health problems. I understand the you were fine yesterday I get that also.

    The weight is something I think we are all dealing with. Wish one of us would come up with a way of handling it then we would tell everyone else on the site.

    Have a lovely Easter.

  • Rice thanks for the lovely reply and the gentle hugs the one positive about having this illness is that you get to meet the kindest and most empathetic people in the world.

    Gentle hugs going right back to you xxx

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