"You've had fibromyalgia for years..."

[Eliza22]

Went to GP on Tuesday about having difficulty getting through the day without feeling I need to curl up and sleep. For hours. I said "I know I'm no spring chicken but my bones & joints are still constantly painful, despite the Paracetamol I've been given on prescription for years. And I'm tired/exhausted all the time". I have been saying this for years. I've now reached the stage where I wake in the night and dread needing to move or turn over as I'm in agony. I've had "tennis elbow" and painful wrists, fingers, feet for at least 3 years and ^every dr I've seen has reiterated that as an ex-ballet dancer, I must expect bone wear and tear.

Then, the GP, a locum said "well, according to your notes, following an MRI scan in 1999, you have extensive cervical spondylosis at all cervical vertebrae and extensive evidence of fibromyalgia.

So, it appears I'm not a hypochondriac with issues of bone idleness. I have a condition and have complained of symptoms for which I've been given no real treatment. For 15 years.

I'm furious. Do I have a right to be? Are my symptoms classically fybromyalgia? Shouldn't someone have told me?

It basically means muscle pain, doesn't it?

It's not something that shows up on a scan, generally a diagnosis when nothing else can be found.

Ah, well that's not me then. For me it's the actual joint and bones. Maybe, I misunderstood her.

Could be used for any kind of unexplained chronic pain I imagine.

My mum has this diagnosis, she would say everything hurts. Even her hair!

Fwiw, I don't think the diagnosis (years ago now) has lead to any real help or change for her unfortunately.

I feel it's an unhelpful label which doesn't mean anything but justifies not investigating root cause of the pain and fatigue any further.

Have you ever had any bloods done and really had any investigations apart from the MRI? Fibro is really a diagnosis of exclusions and there are hundreds of diseases that need to be ruled out.

There's no treatment for fibromyalgia. Mild antidepressants to help with sleeping, perhaps an anti spasmodic if necessary.

It'd a diagnosis of exclusion though. It's so that the NHS can stamp a page and say that you're diagnosed. Unfortunately, it's no real diagnosis.

I don't think a diagnosis of Fibromyalgia is helpful really, I was diagnosed as having it at 15 after years of constant GP visits. I think the only way it can help is that it was a bit easier to access stronger(ish) painkillers. They basically stop looking for any other reason for the pain once they say it's FM. :(

Turned out I actually have Ehlers-Danlos syndrome (was told hypermobility type but I am disputing that a bit as I have lots of symptoms that come up mainly in another type). I had to figure it out myself and convince my GPs to refer me on, Rheumatology wouldn't diagnose so had to be referred to a specialist. Was eventually diagnosed with that at 21.

It can be a long process being diagnosed with the reason for chronic pain even if you know what it is! And I think the FM diagnosis just made it harder!

I would make an appointment with a GP that knows you and go through this with them, I would think that they would have prescribed you with better painkillers or at least referred to pain clinic with the initial FM diagnosis, with that they have at least they have acknowledged there is a problem, so not doing anything to help you is really crap!

Fibromyalgia is often misdiagnosed.

It may be that you have a condition called: osteomalacia

I am not saying that is the case, but it is probably worth thinking about , and eliminating from your considerations.

  Can I ask you to do a simple test ,    press  on your sternum with your thumb.    Is that painful,    does it feel like you have bruised that area in the last few days...... ?    Press with a few pounds of force.    


 Repeat this  pressure,  this time on your leg bone ,   2 or 3 inches below your kneecap.   Does this feel as if you have recently bruised or knocked that bone area. Is it a bit painful ?   A normally healthy  person would not feel pain.    


   IF  the answer to either questions is yes ,  then it is probably worth  looking to see if you have osteomalacia.  It is a simple straightforward test. 


         Just so that you know ,  osteomalacia is the adult form of rickets. It comes about because of either low levels of vitamin D , or low consumption  of bone building nutrients.  Bone building nutrients include, calcium, magnesium, protein, boron.

Also bone strength and integrity can be affected by hormonal problems, particularly parathyroid hormone etc.

     I wonder if you have seen an endocrinologist ,( hormone doctor )   and had a these type of issues addressed.     Just visiting a GP , without investigation would not be sufficient ,  following the symptoms you have described. 

  However here is the 

FIRST STEP )

                   Get your vitamin D level checked. 

Your level is important, a low level will interfere with your ability to absorb nutrients from your food. Particularly calcium.

( If you have any digestive problems , such as Crohn's , IBS etc. then this may inhibit Vit D/calcium absorbtion. If you deliberately remain out of the sunshine , or always use high factor suncream , this may limit your vitamin D level .)

   Calcium is an extremely important nutrient for the human body ,  it is the most common metal, it is necessary to have at least 1000mg per day in total consumption.    Do you  take dairy, which is the most abundant source. ?   If not dairy then  do you consume plenty of dark green veg, spinach, chard  etc.  Sardines or other fish with bones in ?   If none of these is true , then you may be low on calcium. 

   Simply checking the calcium in the blood will not tell you how well you are doing ,   your body will strip calcium from your bones in order to keep your blood level up.  

Do you eat plenty of protein , meat fish etc .

   If you want an independent assessment of Vit D , without going through your doctor ,  go to  this NHS  path lab .   They will send you a blood spot  test kit. 

It is Sandwell NHS Trust Path Lab , in the W.Midlands.

www.vitamindtest.org.uk They charge £ 25 .

  If your blood level is below 50 , then start to think about what is in this post.     If it is below  35,   consider it very seriously. 

Good luck . Let us know how you got on.

BTBHealthy

    We have a discussion thread going over in General health ,   "vitamin d deficiency".     More information is over there.

Agree with Bettertobe Healthy that Vit D is essential (vit D3). Also have a look at Mickel therapy. It's an alternative therapy but I have heard positive reports about it.

www.mefmaction.com/images/stories/Overviews/FMSOverview08.pdf

I didn't know they could diagnose fibromyalgia from scans now....

I have similar symptoms - the fatigue, the aches and pains, day time naps, and so on.

I did have low vitamin D but I have not found any relief in supplementing it, even though my levels have now improved dramatically.

Does it hurt to put light pressure on your muscles and to they feel tired like you have run a marathon even though you haven't? Do you get extremely tired after exercise that falls outside of your normal pattern?

If so it does sound like something on the Fibromyalgia/CFS spectrum.

I can understand your frustration but some doctors are not keen to label people with fibromyalgia because 1) they often don't believe it is a real condition and 2) there is no known cure; all the "treatments" are trial and error and based on easing symptoms not curing anything.

Got diagnosed with FM six months ago, to be honest, until that point I had never heard of it. Or if I had, never gave it any attention.
After years and years of many doctors telling me I was exaggerating or that the pain was psychosomatic, my new GP talked to me about fibromyalgia. After a few more months ruling out arthritis and other diseases, got officially diagnosed by an specialist at Guy's.
My main symptoms are generalised muscle pain, achy and swelling joints (specially hands, feet and knees), extreme tiredness, lack of sleep, general feeling of being unwell (flu like aches and symptoms), amongst many others.
Being diagnosed hasn't helped much to be fair, now doctors either attribute everything to FM and tell me i have to learn to live with it(as if i hadnt for the past however many years already) or they try to give me more and more pills.

I had mixed emotions after I got an official diagnosis, I was angry coz for years I had been dismissed and told it was all in my head and relieved at the same time coz I finally had a name for the condition I had been suffering of for years.

Thanks so much, for all the replies. Very helpful and I will certainly ask my GP about the Vit D bloods. I did have a borderline "yes" come back for Rheumatoid Factor but the next test was negative.

I think some relationship between my young life (top ballet school/diets/poor nutrition) from aged 10 and my skeletal development and health has much to answer for but I NEVER expected to get to 52 and feel like this.

My bones (and the skin covering them) feel tender, but I will try the pressure test.

you know all of these symptoms come with seronegative inflammatory arthritis...and are highly treatable. fibro only works as a diagnosis of exclusion if all the other possibilities have been properly tested for

Just googled seronegative arthritis. Interestingly, I have a sister with Crohns and my mum has psoriasis. I have Reynauds and allergies. I wish gp's would be interested in "the person". They always seem rushed and I feel bad if I take more than one "thing" to the appointment.

Fibromyalgia is often a secondary condition, but too often misdiagnosed as the primary one by lazy arsed doctors that give up looking

It's a symptom of quite a few ailments - taken me 11 years & my DD being diagnosed first for my FM to finally recognised as a symptom of Ehlers Danlos Hypermobility too

During those 11 years I've come to know other sufferers & one by one most have gone on to be diagnosed with other conditions of which FM is actually a symptom - everything from a Lupus, Haemochromatosis, Lymes Disease, Schleroderma, Thyroid trouble, Celiac & others I forget

It was DDs paediatric rheumatologist that told me that it's linked to EDS as in it's a symptom of

& no, it's far more than just aches & pains. - it's hypersensitivity to pain, which can manifest in all sorts of ways, including hypersensitivity to light, smell, sound etc during a flare up too & a bad flare up comes on like the worst flu you can imagine

Agree but D can help, B12 deficiency is also worth looking into & magnesium too

HTH

Oh & DDs problems got worse & she's recently been diagnosed with dairy protein & soy allergy - cutting them out if her diet she SATs us helping her aches & pains & stomach trouble too

I've been cutting dairy out with her as support as she's struggling as it's all new - but I'm eating a bit when she's not home & realising it affects me too, so looks like we also have allergy issues

Get yourself over to the allergy section for some advice in testing - but DDs showed up in a blood test during a recent emergency stay in hospital ?ith gastric blockage & Collitis - normal range should have been 10, her blood showed 3,500

So I would recommend allergy testing too, but I'm new to this, so ask the experts on the MN allergy section

Eliza, I know it's difficult but if I was you (and I have been ifyswhim) I would be pushing very hard to see a rheumatologist. I have psoriatic arthritis but no / very likely psoriasis.

Look up joint hypermobility syndrome: as an ex ballet dancer I would put money on that being your problem. It is very similar to the ehlers danlos mentioned higher up and very similar to CFS and fibro in the symptoms it can cause (speaking as a doctor and I have hypermobility so appreciate how crap our profession can be about it!)

sleepy Ehlers. Danlos Hypermobility IS the same condition as JHMS, JHMS is a subtype if EDS & depends who diagnoses you as to what label you get, but both are recognised medically etc

Oops, just spotted you are a Doctor - that comes from UCHL specialists such as Dr Graeme & is on the DWP website too. - though bizarrely listed as separate conditions on NHS & Patient UK sites

Ha ha, it's ok! Some controversy exists about that; eds hypermobility type is thought to be one and the same thing but not by all. My rheum for example does not think they are the same. I have an enormous textbook on the three conditions - the point I was making was that you can have hypermobile joints and not have hypermobility syndrome, but the syndrome is indistinguishable from eds really.

hypermobility.org/help-advice/hypermobility-syndromes/jhs-or-eds/

I think this explains it best.