Fibromyalgia Action UK
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The long and winding road.......... the first post of how many???

I have been following this blog since the start of this year and decided it was finally time to join in with the chat.

A few months ago I finally got the courage to go to my GP with my list of ills................ she was great and arranged blood tests and x-rays for my appointment at an out of town hospital... Myself & Husband duly went along to see a really good Doc... after an hour long appointment where we discussed the 2 surveys that we filled out prior to the appointment then Doc says that she cannot confirm that I have CFS/ME due to the many other issues I have that can cause fatigue and pain... ( IBS, Under Active Thyroid, Osteoarthritis in both hips, a couple of prolapsed discs in the lumbar region which of course in turn triggered the Chronic Sciatica... there are quite a few other things too that you all probably have or know of....) So less than two weeks later this letter arrives saying I'm being referred to the sleep clinic because she thinks the reason for the fatigue is sleep apnoea!!! Then this morning I get a call from a lady ringing to arrange an appt for me at a hospital in the Gloucestershire area then.... she realises she has all my details but the name on her screen isn't mine!! but all the other details are ?? She then apologises profusely and laughingly tells me to forget the phone call! on top of that I get a letter in the post from the physio dept telling me to go for physio later this month!! Physio?? It takes me all the time to get up and go downstairs which is why I spend a lot of the day upstairs in our home....Thank goodness for my wonderful wonderful darling husband and great kids and my sister and brother-in-law and my parents-in-law... Oh and my husbands fantastic boss who understands our situation which started off with me going to our the GP and he diagnoses me with a suspected cauda equina lesion/syndrome (he does tell me that he really hopes he's wrong but better be safe than sorry) this is way back in June 2010 and being sent to a local hospital who then refused to do an MRI because they felt it wasn't necessary then me returning back to the then GP still in a heck of a lot of pain, who insisted I have an MRI so arranged one for me on a Sunday morning at another hospital!.... nice understanding staff? Not!! pushed me down and pulled my arms up because and I quote "you're too fat to go thru the MRI so your arms have to go straight above your head..." at this point I realised I was a sufferer of claustrophobia!!! and get all panicky but then succeeded to calm myself down and go thru the MRI which I was told would take 10-15 minutes but it turns out is it more like 35 to 40 minutes..Arms/shoulders very sore and back is feeling so bad I feel faint... anyway this GP then moved on to another surgery and I started to see a lady GP which is the one I have now but she is only available on Thurs & Fridays... the rest of the week its take pot luck if you get one of the other docs who are 4 ladies and 1 gent, Two of the ladies are great, One is absolutely pathetic and puts every illness I have down to my weight... and the Gent doc I've yet to see but my husband took my daughter in for an appt and he was very off with an emotional teenage girl.... so he his on my list of GPs to avoid along with the lady doc previously mentioned.... So, now I guess I am on the long journey of seeing all the different available consultants until someone comes up with the suggestion that was given to me by a friend who is a GP!! Will I finally be diagnosed with CFS/ME or Fibromyalgia? and how many hospitals/clinics can I visit... ha ha ha ha ha ha, gotta keep smiling:D



3 Replies

Welcome to the group, LLL; it certainly sounds like you've had an 'interesting' time trying to get a diagnosis. Hope you get the help that you need, and that we can all balance out the medical insanity with a bit of our own!

Sara xx


hi well me and my fella have both c.f.s and fybromyalgia and boy do we know about it at times.x

good luck


Yes, welcome to the forum LLL. It sounds as if you have been through the mill already in search of a diagnosis. I have seen eight different specialists now and my GP is happy with my diagnosis of CFS/CPS Fibro/ME, but it has taken a long time and a lot of appointments to get here! I hope that they get you sorted out soon and that your treatment is more caring and respectful than what you have experienced so far. Take care. Jane x


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