Not sure it's fibromyalgia

Hi Sandy,

Sorry to hear you've been through such a tough time.

Like you, I have terrible pain in my joints, hips and dodgy vision and I was originally dx with Fibro by my GP, but on seeing the Rheumy was told I have Joint Hypermobility Syndrome (JHS) also known as Ehler-Danlos Syndrome Hypermobility Type (EDS-HT).

This condition is popular with people who are or were double jointed. It is apparently an under-diagnosed condition, but EDS has various types some which can be dangerous.

Main symptoms are:

loose joints.

easy bruising.

muscle pain.

muscle fatigue.

chronic degenerative joint disease.

premature osteoarthritis.

chronic pain.

heart valve problems.  

If you have ever been double jointed and have any of the above symptoms it may be worth looking into.

Take care  

Erykah

Hi sandybug . .I think I remember you on the knee forum! My TKR was last January.  Most of what you are saying is exactly the same with me, apart from the tachycardia which i don't have.  Also diagnosed fibromyalgia about ten yearsago, have all the painful points typical of the condition. .also had a knee replacement, bursitis in both shoulders, tedinitis in wrist, thumb and now in both ankles.  pain is ever present, and it does get you down.  surprisingly, I have also had some weird vision problem and also loss of feeling in my legs.  I also wonder about the fibro diagnosis, as although I am never free of pain, there are times when it is much better, and times when just turning over in bed is hell.  I know many people are much more affected by this condition . . and as there doesn't seem to be any certain way of diagnosing it, one often wonders.  I would love a day or two without pain but don't somehow think it's going to happen!  I take Lyrica now for nerve pain in my thigh which was a result of the TKR . . but don't really notice much difference except that I no longer have to get up every night to go to the loo!!!!  

Hi, I to am unconvinced I have fibromyalgia. I was diagnosed last week by rheumatologist. After years of suffering, tests, scans etc, she simply asked a few questions, tested my joints. Told me I had slight hyper mobility then gave me a leaflet on fibromyalgia. The symptoms certainly do match, however I do not feel depressed. Maybe slightly irritable, but constant pain can do that lol. I told my cousin who is a nurse and she said she did not believe such a condition existed and it was simply a name doctors gave to a condition they are unable to diagnose 😞 I was angry with her as my pain is very real. But she said she believed the symptoms of fibromyalgia match countless other conditions and I should not stop asking to be tested for other possibilities. Basically she believe that fibromyalgia is a description of symptoms for an as yet undiagnosed ailments. Kind of makes sense.

I have always believed i have some type of food intolerance, certainly my pain appears to lessen when I avoid gluten or dairy. Both of these are well documented to cause similar symptoms to fibromyalgia. The issue is there are no specific tests to confirm intolerance, only allergies i.e. celiac.

When I removed gluten from my diet, my pain reduced significantly enough to notice the difference. On reintroduction my ailments came back. On avoiding dairy I also noticed a difference to my skin also my dark eye circles reduced.

I also find symptoms are worse during my periods, so perhaps hormones play a part in it as well. My mother went through an early menopause(40) I am now 41.

Doctors seem reluctant to look further into any of this, they say things like no family history or your far to young etc it is so frustrating.

I also hate being made to feel like a hypochondriac, so although I have been diagnosed with fibromyalgia. I still want to find out what is causing it xxx