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Fibromyalgia, M.E./CFS & Similar Conditions - Could This Be You Too ?..

(8 Posts)
Rockinhippy Thu 17-Oct-13 11:06:59

As I was diagnosed originally with Fibromyalga, which when I realised didn't fit all of my symptoms & I continued to ask my GP for help, resulting in an additional " Severe M.E./ CFS" diagnosis too - as the years have gone by, all 11 of them hmm I have continued to collect a string of diagnosis, such as chronic migraine.

More recently, due to my DD being diagnosed with EDS Hypermobility type last November, things have changed - my diagnosis has changed, FMS being a symptom of my true Ehlers Danlos diagnosis.

I'm not the only person I know, whose diagnosis of Fibromyalgia &/or M.E. has turned out to be wrong & the real diagnosis be EDS, which has opened up more understanding & better treatment options, hence why I am sharing this video here, as I've found it to be the most comprehensive & informative I've seen to date & if it helps one person get a true diagnosis & help, then it's would be worthwhile.

My DM was diagnosed just before she died, having lived the later half of her life with an M.S. - turns out EDS actually fit her symptoms FAR better.

I should also add, that I have never considered any of us to be particularly flexible, but realise now that we just didn't notice, as it wasnt extreme & was our "normal" , besides I'm not flexible at all these days, but DD & I passed the tests easily, my DM too retrospectively.

Video info in the link

If this sounds like you, you need to see a GOOD UNDERSTANDING OF THE CONDITION RHEUMATOLOGIST - so do your research for your area & if close to London the main specialists in this area are based at UCLH, Rheumatology, under Dr Grahames Lead.

Video Link

Good Luck

newestbridearound Thu 17-Oct-13 16:20:40

I have M.E and did some research into EDS but pretty sure I don't have it- I did chat to my specialist about it but he agreed it was very unlikely. However I know at least 4 people who were misdiagnosed and are now being treated for EDS; and apparently something like 25-30% with M.E are more likely to have something else.

It's an interesting video and definitely something that needs more awareness. Glad you are getting better treatment now smile

RockinD Thu 17-Oct-13 16:35:03

I was diagnosed with ME by my GP and a consultant when my blood tests quite clearly showed I was vitamin D deficient, ferritin deficient, low in vitamin B12 and folate and hypothyroid. Fixing those various things has made a phenomenal difference to the way I feel and the whole experience has made me very suspicious of an ME or fibromyalgia diagnosis.

Everyone I know with a diagnosis of ME or fibromyalgia has one or more of the following : vitamin and mineral deficiencies, a thyroid problem, has experienced a shock or profound stress immediately before the start of symptoms, indicating that the adrenal system is compromised.

The NHS continues to offer these dustbin diagnoses rather than treat the underlying causes of symptoms.

celestialbows Thu 17-Oct-13 18:23:34

Rockind I'm fascinated by your reply. How do you find out what you are deficient in? I have undergone chronic pain for a few years plus had several stressful life episodes.
I'm just being diagnosed now and at the very start of the journey of having a name for my symptoms after being fobbed off on numerous occasions.
I was feeling relieved at first but the more I read the less confidence I have!

mercibucket Thu 17-Oct-13 18:57:27

thanks for the video

how did you convince your gp?

RockinD Thu 17-Oct-13 19:01:44

I'd had fairly comprehensive testing on the NHS.

Do you know whether you have had any of the following tests?

Vitamin D, vitamin B12, folate, ferritin, serum iron, full blood count, TSH, FT4, FT3, TPO, TgAB, cortisol

Also, beware of doctors who say that your test results are 'normal'. In many cases this means the results are within the reference range, but far from optimal.

For example, if the range for ferritin is 15-150 and your result comes back at 16, it's within range, but that takes no account of the fact that it needs to be at least 80 to avoid symptoms of pain, fatigue and hair loss.

It might be an idea to check back with your doc what tests you have had and get a copy of the results, with the reference ranges. It's surprising what turns up when you do that exercise.

celestialbows Fri 18-Oct-13 05:23:31

Wow Rockind thanks for the list. I have no idea what the tests included, they were testing for rheumatoid arthritis and got connective tissue disorder. I have just changed GP, the last one refused to show me actual test results stating 'it's too technical'. One of the many reasons I have a new doctor now!

RockinD Fri 18-Oct-13 12:09:36

Under the Data Protection Act, your test results count as your data and therefore you are entitled to a copy, and if you ask for one, they cannot refuse you! If they do, then you can complain to whatever organisation superseded the PCT.

If I were you, I would be ensuring I got copies of all my test results over, say, the last two years, and then seeing what tests have been done and what have not.

You don’t have to be technically minded to identify a test result that has come back low in range, or one that has been marked up as HI or LO by the lab and then ignored by your GP!

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