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Fibromyalgia- do you accept diagnosis?

(28 Posts)
itwillbebetter Sat 15-Nov-14 13:50:48

After 18months of ill health my diagnosis has come down to fibromyalgia. I have exhausted myself and spent a lot of money trying to get to bottom of my issues. I have had every test, scan, MRI possible and now it comes down to this in addition to hashimotos (which is bring treated with NDT as well as gluten free)
I really don't believe it but with nothing else showing up I have no where else to go. I have been tested for every vit & mineral deficiency going as well as stool samples, wee samples, saliva testing, diet exclusions.
I just wonder how many others don't truly trust their diagnosis?

JellieG Sat 15-Nov-14 14:11:51

Hmmm. I'm guessing you're not feeling great at the moment but why would you not trust the diagnosis? You've had loads of tests conducted by skilled professionals with no reason to misrepresent the results.
I can certainly understand why you would prefer not to have fibromyalgia and Bad News is often accompanied by a sense of disbelief but it is what it is. Bearing in mind the serious nature of the implications of your diagnosis I wonder whether some supportive counselling would be a reasonable thing for anyone in your situation? Could you discuss that with your GP? And there are support groups (Fibromyalgia UK is one) for people with and interested in this condition.

hashtagwhatever Sat 15-Nov-14 14:15:11

I too have hashimoto thyroiditis and I don't believe everything is down to my thyroid problem, getting the drs to believe otherwise is a hard task. I totally understand where you are coming from.

OneFlewOverTheChickenHutch Sat 15-Nov-14 14:31:13

I think I understand where you are coming from itwillbebetter I'm currently debating whether to begin the process of being diagnosed with fibromyalgia.

On paper I have all the symptoms but I find it really difficult to accept that things won't get better and I won't get the 'fix' I desire. I want better explanation as to why at 32 some days I feel 302. I want a cure not a chronic illness, particularly not one that is viewed quite so skeptically.

I think if/when I get an 'offical' diagnoses I will feel defeated, so if I'm truly honest with myself it isn't distrust of the diagnoses but blatant denial that this is now me forever.

...well aren't I a cheery soul this afternoon grin

itwillbebetter Sat 15-Nov-14 15:07:29

JellieG Yes you're right, I've had lots of tests but the skilled professionals can only tell me what I haven't got. So for me, fibromyalgia is not really bad news, because I have ruled out the big nasties (RA, lupus etc). I just feel like its a last ditch diagnosis only because I fail to 'fit' anything else. Does that make sense?

I supposedly have tested positive for most of the trigger points but that's it, no overwhelming fatigue, no headaches. I just have unrelenting pain in joints and tendons and days where I need to crash for a few hours due to pain and flu like feelings. Is that it? Is that fibromyalgia? I read other peoples experiences and feel like a fraud. I certainly hurt, but I swim every day, do pilates twice a week, I'm certainly not bed bound.

Oneflew Yes I understand what you mean about feeling defeated, that's where I am now. Maybe I am suffering from denial because I cannot concede that I will not crack this and find a cure. Currently I am now researching myofascial massage and trigger point release. I am driving DH crazy with the need to 'pin' this on something.
Do I need to accept this or carry on looking for the miracle cure?

OneFlewOverTheChickenHutch Sat 15-Nov-14 19:33:56

I think for me, I'm just not ready to accept it. The nature of the diagnosis (among other things) being the absence of anything detectable doesn't sit well with me at the moment, it doesn't feel tangible enough.

I suppose ultimately do you feel like you have exhausted all other possible options, will it make it better or worse to have this as your illness?

Rightly or wrongly, at this point in my life it's better for me to reject this condition. Not necessarily in the hope of finding a 'cure' but because believing that it might get better allows me to get through the bad days and enjoy the good ones rather than dwelling on when I might next have a knackered-beyond-belief-skin-so-painful-I-can't-hug-my-toddler phase.

I'm not having it, so it can bugger off!

QueenofWhatever Sat 15-Nov-14 19:54:51

I've been diagnosed with fibromyalgia and now also chronic fatigue syndrome. I've also been referred to an endocrinologist just to double check my thyroid and adrenals.

Fibro is a syndrome, which means it's a collection of signs and symptoms. There's also no definitive test to prove that you have it. I think that's why it feels like a dustbin diagnosis. However as a presenting condition, it's been around for a couple of thousand years.

My view is that something like this does exist, but all the people diagnosed with fibro might actually have different things going on, a bit like autism or cardiac disease. At least it's being taken more seriously now, even ten, fifteen years ago it was often misdiagnosed as mental health. Especially as it predominantly occurs in women and we tend to be hysterical etc.

However it's worth persevering with getting a balance of meds that work for you. I have also found eating paleo, Epsom salt baths and acupuncture extremely helpful. 'Lifestyle changes' sounds a bit flaky, but they can be very powerful.

Sometimes there just isn't an answer and a cure. But the hippy in me believes that's the lesson in it.

Discombobulat3d Sat 15-Nov-14 20:33:04

oneflew I hope this doesn't sound awful, but if you're debating beginning the diagnostic process, there's still a fair chance you don't have it! I think the rampant self diagnosis of fibromyalgia that seems to happen is one of the reasons people can be so dismissive of anyone diagnosed with it. Please see your GP, who should then refer you on to get a diagnosis, if appropriate. You'll then get treatment that you need.

itwill you go through the stages of grief with chronic illness, it does take a while to get to acceptance. The symptoms are similar for so many other conditions that it can make it difficult to accept you've got the right diagnosis, particularly when diagnosis involves a lot of testing for everything else and waiting! You don't need to push yourself, you'll get there eventually.

OneFlewOverTheChickenHutch Sat 15-Nov-14 22:02:49

Hi Discombobulat3d not at all smile, I'm being quite negative possibly dismissive but only to myself and not to anyone who suffers with the condition.

When I said beginning the process it's more I've had years of physio, a multitude of tests, consultants & pain meds. Your message to itwill sums it up really, I'm sat with my fingers in my ears singing la la la.

RockinHippy Sat 15-Nov-14 22:10:01

I was diagnosed in 2003, I never believed in it as a primary diagnosis, but my gut feeling was that it was a symptom/secondary condition linked to something else - I kept pushing, eventually got sent to an M.E. Clinic & was given an additional diagnosis of severe M.E., same went for the chronic migraine diagnosis I got a year or do later.

Long story short, I collected diagnosis until eventually I was proved right when my Dd started having health problems & recurring injuries.

11 years Dow the line my true diagnosis turned out to be a hereditary condition- Ehlers Danlos - we have the Hypermobile type & Fibromyalgia is a symptom of that

HeyMacWey Sat 15-Nov-14 22:10:33

Snap. I have cfs but apparently on the fibro end of the spectrum because of the unrelenting pain. Some days I don't want to accept the diagnosis but after all the tests there isn't anything else showing. Also - is it worth the energy denying it if you see what I mean. I'm not going to get better overnight so there is no point in fighting it. Or searching for what else it could be.
It is shit having a chronic illness. I never thought I'd have my day to day life limited so much but you have to make the best of what you've got so I've learnt to take pleasure in the little things in life.

RockinHippy Sat 15-Nov-14 22:19:00

PS Fibro is know as "a waste basket diagnosis" for exactly the reasons you mention, I've known many sufferers, who like myself eventually go on to be diagnosed with something else - they run a standard battery of tests, rarer conditions tend not to show up in those tests & thyroid tests are too often flawed.

I've known others like myself later be diagnosed with EDS, of which POTs is a symptom too, some with schleroderma, thyroid disorders & sticky blood syndrome (forget the medical term) to name a few - that's not to say FM isn't a condition in its own right, but if your gut feeling is there's more - then keep looking,,educate yourself & your doctor until you get there

Good luck

MiddletonPink Sun 16-Nov-14 14:12:50

Interesting thoughts.

I've recently been given a limp diagnosis of FM.

GP first mentioned it when I went back to see her with chronic fatigue, hip bursitis, stiffness, brain fog, depression, sore all over. She referred me to MSK who again said it was FM but the symptoms needed treating.

Had steroid injections in hips and waiting to see someone at the pain clinic. I've been prescribed amitryptiline by GP after going back to her in constant pain.

Had no MRI scan or other test apart from bloods.

This last week my left foot/leg has been numb, pins and needles and feels like it's on a block of ice. Went to see another GP who has now referred me for a MRI.

I can't help get the thought it's MS out of my mind.

denialandpanic Sun 16-Nov-14 16:05:00

17 years ago I was turned off talking to doctors about my chronic back pain dating from childhood after they flung the fibromyalgia diagnosis at me .Guess what it's anklosing spondylytis and psoriatic arthritis and it wasn't treated for those years because of lazy doctor's looking for a dust bin diagnosis. I might have a funny presentation still.....You know what fit active 21 year olds don't repeatedly present at doctors surgeries for fun. what's the point of giving people a label that you can't add a treatment for especially one that half the doctors don't believe in?

apologies to anyone accepting and trying trying to get on with this diagnosis but I feel strongly that you are being let down.

RockinD Sun 16-Nov-14 17:16:14

It does seem that a lot of people with a fibromyalgia diagnosis are being fobbed off by the NHS, who would rather not investigate the actual cause of the symptoms, which is likely to be something on the thyroid/adrenal axis and yes, I know everyone will say they've had their thyroid tested and it was fine. However, it is a fact that most GPs and not a few endocrinologists are very poor at interpreting these tests correctly.

Speaking as someone who was diagnosed with CFS when blood tests showed quite clearly that I had non iron deficiency anaemia, hardly any vitamin D, low B12 and low folate, as well as an underactive thyroid probably from a pituitary cause, I would suggest you don't allow yourself to be fobbed off.

If you're Hashis and on NDT, my first thought would be, are you taking enough?

KatyMac Sun 16-Nov-14 17:31:09

I was disquieted by my Fibromyalgia diagnosis, coming 15 years after my CFS diagnosis

I've struggled with it for a while & added in actual B12, Folate, Zinc & Vit D deficiencies

But my gastro symptoms are 'just' IBS & a "fast transit time"

I feel there is a range of conditions which the doctors don't understand fully,I feel that these are probably auto-immune, I feel that in the next 20 years (or so) they will be understood better

My Brother in Sweden is being treated for RA - when they diagnose that they start with gastro tests & he is being treated (most recently) with a biological treatment (which is somehow connected to TB) after having some chemo therapy drugs for years. I'm sure this is cutting edge stuff even if I don't understand it.

Reredos Sun 16-Nov-14 19:52:42

I have suffered from endometriosis for nearly thirty years and had a diagnosis of fibromyalgia 15 years ago. In the last six months I have been diagnosed with two auto-immune diseases; Grave's (over active thyroid) and Coeliac. My husband is convinced they are all somehow linked.
Interestingly, since being strictly gluten-free, most of my fibro symptoms have disappeared. I no longer get morning stiffness or pain in my hips (bursitis) or lower back. Coincidence?

itwillbebetter Sun 16-Nov-14 20:47:32

RockinD I am only on a tiny dose of NDT, 1/2 grain daily. My results have gone from
tsh 3.98
t4 16.1
t3 3.0 (my t3 is the only reading that ever comes up as abnormal on the nhs scale)
thyroglobulin antibody 130.6 (positive high)

After 2 months results are now
TSH 1.76
t4 15.2
t3 4.1

I had to go to private endo to get hashi's diagnosis and she is happy with those results and does not want me to increase dose. I feel there is still a problem there but am at a loss as to know what to do.

middletonpink I am currently reading a book about fibromyalgia and myofascial pain syndrome by Dr Chris Jenner. He points out that in his years of treating fibro patients many present with symptoms of MS and this is the big fear of many people. He has never actually had a patient that went on to have the MS diagnosis. Hope this helps.

Reredos Interestingly I also suffered endometriosis for many years leading me to have a full hysterectomy 4 years ago. It was after this that all my symptoms sprung up. I too believe that this is all linked. I think the trauma of my major surgery put my body into shock and has jolted all my hormones out of whack. I have spent thousands getting every thing tested and I know that the answer is there somewhere, I'm just starting to feel I will never find it.

It seems that most of us are very unhappy with our diagnosis and I don't think its because we are in denial, I just think intuitively we know there is something else. Fingers crossed we all find it!

MiddletonPink Sun 16-Nov-14 22:16:30

That is reassuring to know OP thank you.

RockinHippy Mon 17-Nov-14 00:20:02

I also have a lot of cross over symptom with M.S. Middleton but M.S was ruled out several times over the years for me too

My DM had M.S. so unfortunately I knew the symptoms well, but we turned out to have the hereditary condition Ehlers Danlos Hypermobility instead - my DM included - M.S. Turned out to be a complication of that for her as it wasn't diagnosed until later in her life.

Ehlers Danlos & POTs which is a symptom of it it, along with Gastroparesis, which can manifest in a similar way to IBS, along with musculoskeletal stuff & pinched nerves because of that, migraine, mast cell problems, automatic nervous system abnormalities, which cause hypersensitivity, anxiety like symptoms & much more depending on the type diagnosed

Sorry it's late & I'm ill so rambling a bit, I'm basically saying that it's under diagnosed & it can link all of those symptoms & much more together

sanfairyanne Mon 17-Nov-14 09:06:43

if you have only been treated for 2 months for hashi, and your tsh is not yet under 1, it is probably that to be honest. took me about a year to start to feel normal and i need my tsh completely suppressed
fibro is a crap dustbin diagnosis that essentially means 'we cant be arsed'. could be eds, hashis either untreated or badly treated, vit d, b12 below 500, types of arthritis, mitochondrial problems, anything really, but for doctors to just give up on finding out is pretty pathetic

sanfairyanne Mon 17-Nov-14 09:08:47

if you cant get your meds increased and dont want to buy your own, it is worth trying gluten free and paleo to try to rebalance and stop the autoimmune response (your thyroid antibodies)

RockinD Mon 17-Nov-14 12:13:30

sanfairyanne It sounds as if you and I are on the same line here. I would certainly expect to see a suppressed TSH and a higher FT3 on NDT and that, together with the symptoms, suggests to me that OP is under-medicated. Half a grain is a tiny dose and really she should be increasing by half a grain daily every six weeks or so until the dose is reached that relieves symptoms.

Miggsie Mon 17-Nov-14 12:22:10

Fibromyalgia and Ehlers Danlos here as well - took years to get a diagnosis. I have accepted it - I'm 10 years down the line and learned to live with my body as it is, not as I wanted it to be.

For any chronic illness like this the medical profession is pretty useless, I use diet, specific exercises and activity pacing to get through the day. I also see an osteopath regularly to get my spine back in shape.

MiddletonPink Mon 17-Nov-14 12:29:58

Thanks Rockin. It just feels like a true diagnosis is very hit and miss doesn't it?

One minute I think it's FM, then wonder if it's some kind of MH issue because of the anxiety, then MS keeps popping in my mind.

I've had strange ibs symptoms for 10 years that have never been given a diagnosis. Very slow transit time. Only go to the loo twice a week, then I can be on and off for a few hours. ( sorry ) I'm wondering now if this has been a FM/MS symptom that I've just learn to live with?

I hate feeling like a hypochondriac. sad

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