Michele's Story

I am 49 and for the past 23 years I have been mis-diagnosed, non-diagnosed, largely dismissed; and even struck off from one surgery, for what I believe is an autoimmune condition. 

In spite of seeing a Rheumatologist for the past 5 years, I still haven’t been told categorically what it is I suffer from. I only once caught a glimpse of my notes where I saw the words ‘mixed connective tissue disease’ and ‘fibromyalgia’ scribbled.

I first began to suffer from overwhelming tiredness 23 years ago after the birth of my second child. The doctor suspected M.E., although back then there was much debate as to whether or not it actually existed. I suspect that not much has changed there, although I may be wrong. The doctor felt there was no more he could do for me in the light of the fact I’d been there practically on a weekly basis for over a year and nothing could be found. Apparently I had post-natal depression, M.E., kidney stones, amongst God knows what else. And so I as struck off his list. 

Nothing was done for 12 years until we moved from England to Scotland and a whole new range of unexplained conditions emerged, and I continued to take a whole raft of medication to go with them - none that I could tolerate. 

One day a particular blood test came back with some unusual results that actually indicated something was amiss, and I was referred to a Rheumatologist in 2011. I saw this man once a year for 4 years and was prescribed some tablets that (as usual) I couldn’t tolerate. It’s impossible to see the Rheumatologist outwith your own appointment because they are so stretched so you can’t just call up to get to try something else. The Rheumatologist referred me to the Maxillo facial people for my blocked salivary glands. The Maxillo consultant saw me on 5 occasions over 3 years and concluded that treatment for this particular condition would now be futile, as my parotid gland had been damaged for so long (over 20 years) it was unlikely that treatment would fix it, and I didn’t much like the idea of having it removed. He did however say that all the evidence in my notes pointed towards Mixed Connective Tissue Disease. I’d never heard of it and until that point no-one had even suggested it. I’m going back again soon to see my Rheumatologist with an entire list of all my symptoms and maybe this time he’ll agree. 

Regardless of what he says, I’m not wanting to take any medication at all beyond the paracetamol and ibuprofen that I already take. I’m just too hypersensitive to them and even one other kind of pill would stop me functioning and unable to work, which is not an option. I very much doubt that I would be considered as ‘disabled’ by the DWP. My husband is 45, has Psoriatic Arthritis and Diabetes, and somehow functions at work on 24 pills a day and a once a week injection. He is considered ‘disabled’, and the NHS/GP services here are second to none. Everyone he has come into contact with deserves a medal and a doubling of salary. 

So I could have Mixed Connective Disease; Fibromyalgia; ME; Lupus; Sjogrens; Polymyositis, and/or Rheumatoid Arthritis. Maybe I could have them all!
As I hurtle towards the menopause all I want is a proper diagnosis and prognosis and I’ll just keep going until I can’t manage anymore. 

I don’t mind sharing some of my worst symptoms as they are just now, just in case anyone can relate. They are:

Lumps in back of neck;
Ice liquid trickle sensations in brain;
Infrequent dry eyes;
Benign Paroxysmal Positional Vertigo;
Mouth ulcers;
Blocked salivary glands/swollen parotid glands;
Difficulty swallowing;
Shortness of breath after the slightest movements – can’t even turn over in bed!
Permanent and whole body pain;
Permanent and severe fatigue, which can be overwhelming and sudden;
Foggy memory;
Total loss of use of both smallest fingers;
Severe pain in every joint; 
Severe pain in hips/pelvis which means I can’t sit or stand for more than 15 mins, so no work meetings, no cinema, no shopping trips, no driving a long way etc. etc.
Recurring phlebitis and varicose vein clots; 
Thin skin and blue fingers when cold;
Fibroids and menorrhagia.

My sympathy to anyone having to live with any/all of this lot and being told 'there’s nothing wrong with you' or 'we can’t find anything'. Maybe some of those billionaires might get some of these symptoms and think about putting up some money for research!