Fibromyalgia - diagnosed

jennihen

Unity wrote: »

Jennihen - when you got your Lupus dx was it down to blood tests? Mine have proved inconclusive, so now I am waiting for another appointment to see a dermatologist to hopefully determine whether the rash is indicative of this.

Hi Unity
The first dr I saw thought I had Lymphoma and in his words 'I was a goner'!! Ihad a several biopsies then it all got put on the back burner as the flare up ended. this was about 10-12 years ago. Lupus was one of the things I was tested for but the ANA antibody didn't start showing up until about 8 years ago. Even then the rheumatologist said that the levels weren't high enough to conclusively say Lupus.
When I changed to ny current GP he took all my notes home to read (back to when the first autoimmune responses showed up aged 7) He is on very good terms with my current rheummy and they regularly confer together on my treatment. Gp also did repeated all my blood tests instead of having random results all over the place. This provided a comprehensive baseline.
Because I have no major organ involvement the rheumatologist sometimes refers to me having a Mixed Connective Tissue Disorder.
I have so many of the same symptoms that you described
I got a couple of really good books from Amazon and learnt up as much as I could about it all. I hate it when things aren't discussed with me - its my crappy body thankyou and I probably hold as much of the key to managing my illness as the doctors do!!!
Out of interest are your eyes particularly dry? I couldn't wear contacts but didn't know that Sgrojens is all part of this?
Best of luck Honey - I know what you're going through x

jennihen

Sorry if that doesn't all make sense - am on my last legs with fat swollen fingers!! And peeps don't unstand why I can't be bothered to have a man in my life!!!

Unity

jennihen wrote: »

Sorry if that doesn't all make sense - am on my last legs with fat swollen fingers!! And peeps don't unstand why I can't be bothered to have a man in my life!!!

It all makes perfect sense to me Jennihen and thanks for taking the time to reply. I saw a rheumy with an interest in Lupus just over a month ago. I had done a fair bit of research and was especially surprised to learn from reading up, that an allergy to Septrin can be a trigger for Lupus. Back in the 70's I had a massive reaction to just one tablet - in that I couldn't stop scratching and by the morning was just a mass of blood blisters from head to foot. I never believed it possible to have an itch down my throat, but I had one with this, and every other orifice! :eek::o My OH phoned a pharmacist who said on no account to take any more tablets and my GP stuck red stickers all over my medical notes. Subsequently all my skin peeled off - just like sunburn.

The rheumi didn't even comment! I received a copy of the letter to my GP which stated "The patient denies a history of Raynaud's". Lord knows where this came from since I confirmed I was dxd with this in '94 and it was on the list of previous diagnoses that I handed over at the appointment.

The rheumi was in the next city so I knew my notes would not be available as it is a different trust - so I took a list of symptoms, previous dx's and allergies. I haven't had any results of blood tests from this appointment although the ANA was not abnormal in the tests done at my GP's.

I've always had dry eyes and when I was younger - no optician would let me have contact lenses. However with the advance of thinner and softer lenses I was fitted with some, but could never wear them all day. Just at present my eyes are gritty and this is an added problem as my optician says I'll be lucky to get away with varifocals because of my prescription. Instead I have one contact lens for distance and one for reading, which up until recently worked quite well. So now I am wearing specs for distance and having to change them to read or knit. It's a small problem but it is yet another one on the never ending list.

My fingers swell too as do my feet, but as you will know - supposedly there is no inflammation present with Fibro .

I will PM you if that's okay? I don't want to hi-jack the thread away from fibro , although I am aware that Fibro, ME, Lupus and MS all share common symptoms and people dxd with one of the above often go on to be dxd with another:rolleyes:.

jennihen

Feel free to PM - will be back on tomorrow. I have to point out you are talking to a woman who has managed to wash one of her work shoes on a 30` wash and carefully put DD1's permission form in the fridge!!
Night for now x

CrystalGecko76

Lupus is extremely rare. I was thought to have it back last year and had loads of tests all came back negative. I had the face rash, aches & pains, Sensitivity, rashes/ulcers in my mouth, dry & painful eyes (which I still have), dry mouth...but they now say it is all the Fibromyalgia. Fibromyalgia is a mimic. It can give the symptoms of many other nasty conditions...that is why after testing for many other things and coming up negative the doctor will then say it is fibromyalgia...me & mum think this is code for "we don't know what the heck is wrong with you, keep taking the pills & go away"...lol

TOBRUK

Jennihen and Unity, you both have mentioned about 'dry eyes' and this is something I suffer from. I have M.E. and about 4 years ago I began having blurred vision quite often, it was really bad at times and I was very worried about it - I thought I was losing my sight. My eyes at times felt itchy/scratchy, and at times painful. My GP referred me to an eye specialist, and after tests I was told that I had 'dry eyes syndrom'. I had never heard of it before.

It is a condition where you don't produce enough tears (to do with tear ducts) which clear your eyes (a bit like wipers on a car) and get rid of dust etc. It can become very serious if not treated - I have eye drops (artificial tears) which I take 4 times a day. Apparently it is something you can suffer from when you have M.E. I went through a time when I was so thirsty, told my doctor about it - she did tests for diabetes etc. anyway in the end I was told that I had 'dry mouth' - it is a condition you can have as well as 'dry eyes'.

Just thought I'd share since you may be suffering from this condition and perhaps should see your GP about and get referred to a specialist.

Unity

CrystalGecko76 wrote: »

Lupus is extremely rare. I was thought to have it back last year and had loads of tests all came back negative. I had the face rash, aches & pains, Sensitivity, rashes/ulcers in my mouth, dry & painful eyes (which I still have), dry mouth...but they now say it is all the Fibromyalgia. Fibromyalgia is a mimic. It can give the symptoms of many other nasty conditions...that is why after testing for many other things and coming up negative the doctor will then say it is fibromyalgia...me & mum think this is code for "we don't know what the heck is wrong with you, keep taking the pills & go away"...lol

I totally agree regarding the GP's code for fibro . Most of them don't actually believe it exists - until they can't put things down to anything else :rolleyes: and then everything including Athlete's Foot is put down to Fibromyalgia .

TOBRUK wrote: »

Jennihen and Unity, you both have mentioned about 'dry eyes' and this is something I suffer from. I have M.E. and about 4 years ago I began having blurred vision quite often, it was really bad at times and I was very worried about it - I thought I was losing my sight. My eyes at times felt itchy/scratchy, and at times painful. My GP referred me to an eye specialist, and after tests I was told that I had 'dry eyes syndrom'. I had never heard of it before.

It is a condition where you don't produce enough tears (to do with tear ducts) which clear your eyes (a bit like wipers on a car) and get rid of dust etc. It can become very serious if not treated - I have eye drops (artificial tears) which I take 4 times a day. Apparently it is something you can suffer from when you have M.E. I went through a time when I was so thirsty, told my doctor about it - she did tests for diabetes etc. anyway in the end I was told that I had 'dry mouth' - it is a condition you can have as well as 'dry eyes'.

Just thought I'd share since you may be suffering from this condition and perhaps should see your GP about and get referred to a specialist.

Thanks for this Tobruk, I had similar problems with my sight and things going blurry - in my case it seemed as if there was something like a sparkly dandelion seed head to the bottom left side of my vision. If you still get problems with blurring and haven't had this done yet, ask for an ultrasound scan of the veins and arteries in your neck. It was only when I had this that they found the arthritis in my neck was nipping various blood vessels and restricting the blood flow to my brain. It's yet another of those things that I just have to learn to live with.:o However it is handy to be able to identify what is wrong, especially when you think - like I did, that I was losing my sight.

starchild1972

There is nothing to stop a GP diagnosing Fibromyalgia. A rheumatologist is usually called upon where there may be other symptoms not usually associated with fibro, such as arthritic conditions etc.

It's just some GP's won't take the responsibility of diagnosing it due to new benefit rules.

Bethankim

Im so glad my GP is knowledgeable and put it together without too much of a problem, although havent had the blood tests back yet, so its still Fibro with a question mark.

I just havent really got my head round it and i guess thats the bit that takes a while, im off to a support group on saturday ive found locally so that will be good.

I have lots and questions and fears really, and despite taking it very east for the last 10 days due to a flare up, well actually vant say ive had a good day in the last couple of months..im struggling and i so so want to do this course, but its hard when i feel so sore and shattered beyond belief. especially not easy when i doing massage treatments and when the salon (1 afternoon a week) is busy and i can just about manage 1 client its a bit soul destroying..partly because this for me was my route back to a new career and reclaiming my life after my car accident and life imploded...

sorry rough day, and im home alone for a week with noone to tell..my family are as usual unconcerned and call it my new thing and as of sunday when my now ex decided to dump me via facebook im feeling just a little bruised

yellowrock

anyone have facial tingling with their fms? Mine started yesterday, no other facial symptoms apart from occasional tmj probs - although this not active at mo

thanks