Fibromyalgia

LameWolf

somebody_else wrote: »

That's interesting, 'cos my Rheumatologist has suggested that I've also got lupus.

I do wonder, actually, how many people who've been 'diagnosed' with ME/CFS/Fibro have had lupus ruled out as a diagnosis. From what I've read, it's more common than Rheumatoid Arthritis, but rarely diagnosed accurately.

It took me ages - and a move to a new town - to get an accurate diagnosis. Where I used to live, I saw one locum after another, they never seemed to have any permanent staff, and they all just went along with the rheumatoid arthritis diagnosis the first one had made.

Once I moved to Milk'n'Beans (as its affectionately known) I saw a rheumy with her head screwed on, and she did additional testing.

somebody_else

LameWolf wrote: »

It took me ages - and a move to a new town - to get an accurate diagnosis. Where I used to live, I saw one locum after another, they never seemed to have any permanent staff, and they all just went along with the rheumatoid arthritis diagnosis the first one had made.

I've been very lucky with this particulary Rheumatologist. She's the 3rd or 4th one I've been referred to, but the only one who bothered to see me before x-rays were done to see if there was any joint damage (my blood tests frequently suggest that I might have RA).

I've got several of the symptoms of SLE, but none of them are severe enough to be definite about the dx. Although, since seeing this Rhuematologist, another doctor had independently asked if I've got SLE because of other symptoms that have started becoming a problem, so it's looking more likely than not.

Careful_with_that_Axe

Funny enough, my Rheumy says I have Rheupus as my Lupus is not a definite dx as I don't have the anyti-N antibody in sufficient quantities. It's also atypical as I have so many cross-over symptoms. I am absolutely convinced thsat all auto-immune problems are linked in some way and the dx is only a label to hang on the most diagnostically obvious symptom. I also strongly believe in a heriditary element as Mum had SLE and developed lymphoma and lo and behold so have I.
One of my Sister's friend's husband is actually involved in research into this and I've given him my full medical history and a blood test as part of a study group.
anyhoos, I must drink my tea and have my drugs of choice as my head is starting to pound. Damn my self-indulgentself and the wine at lunch.
Later my lovelies.
x

Careful_with_that_Axe

Bigzippy, I found that if I took Tramadol with any regularity, it actually gave me headaches. I am finding Diclofenac much more effective at dealing with the pounding. Have you tried this?

Unity

Careful_with_that_Axe wrote: »

Purplecat, do you want to have a vent? We're a very understanding and caring bunch here.
I don't have Fibro either but have such similar pains with the med problems I have that it's uncanny.
Dishwasher took 3 tries to get going. It wasn't dissolving the tablets and dishes were still dirty after cycle, but I discovered that I had been careless when loading it and the arm wasn't swinging freely.
I absolutely agree with keeping energy for the things that enhance your quality of life. A very sensible young South african physio drummed this into me. She told me to buy in all the helo I could (cleaners etc.) and use what ebergy I have to keep my mental health positive. I think, like a lot of chronic pain sufferers, I have been on anti-depressants for many years.

BTW - I went to a haberdashers today and got some elastic, some suspender doer uppers and some fabric glue. I'm going to have a cackhanded go at making something to make the sheets stay put. If they are successful, I'll be more than happy to make them for anyone who wants them. No charge I promise!
I find the only thing now that gives me validation is by doing something selfless to help other people. However, as I am so open in offering to do things for others that I can come over as a bit overwelming. But it's the only thing that makes me feel good about myself and that I can at least still contribute something to society.
I am trying to stave off a down mood at the moment so am hoping to go out tonight to see a local thing called "The City of Lights".
Kids make huge chinese style lanterns in paper, put lights inside them and parade through the town.
We're all a bit weird with things like this in Cornwall! Every town has a special parade, like the Bolster, the obby oss etc.
I'll see if I can find a link for it if anyone is interested in seeing what it's about.
It's quite spectacular of the Cornish rain holds off!
Jo
x

www.truro.gov.uk/Core/Truro/Pages/City_of_Lights_5.aspx
OOps! It's tomorrow night!!!

Hi CWTT,

Alas, DH had a look on the main PC but that document is nowhere to be found - perhaps just as well if it is really out of date now. It might possibly be on DS's PC as he got our old one and if I can get his to boot up (long story) I'll have a look.

How wonderful to live in Cornwall, I do envy you . We always used to head to the South West on holidays, particularly Devon (Newton Abbot) Dorset (Corfe Castle and Abbotsbury) and Cornwall - particularly Tintagel. That part of the world has always intrigued me, it's as if there's still something magical lingering there that just doesn't show up in the rest of the country. I love watching Morris Dancers, I'm fascinated by 'The Green Man' and love stone circles - so that's my confession over:o

Do enjoy your 'City of Lights' it sounds wonderful :T.

Unity

poohbear59 wrote: »

:rotfl: :T :rotfl: :T :rotfl: :T

I am off to see my GP soon. I have written my post it note. What shall I talk about this time?

Actually I am going as I think I have cystitis, but it is propably FM!:mad:

Hi Poohbear and snap! I saw my GP this afternoon too. The urine sample I dropped off last week was totally healthy, so the reason for my problems is probably the bulging disc. Mind you he also said, not for the first time that he still thinks my symptoms point towards MS. Funny that, as I had a positive diagnosis some years ago - but then it was retracted after the consultant moved away. He still wants me to think about surgery, but I've said I want to wait until I've seen the genetics people on 26th as other things may take priority.

I was just in the waiting room wondering how many hours I have clocked up sitting there over the past 27 years. Not all for myself I hasten to add, as when me moved to this practice I already had a toddler and a four month old baby with another one to follow seven years later.

I really cannot fault my doc though - he saw me last week with some worrying symptoms and when I went today he had indeed written to the pain clinic consultant to ask him to see me urgently with a view to re-doing the facet joint injections. Good GP's are worth their weight in gold :T.

somebody_else

Unity wrote: »

Good GP's are worth their weight in gold :T.

Ain't that the truth!

sharon59

somebody_else wrote: »

That's interesting, 'cos my Rheumatologist has suggested that I've also got lupus.

I do wonder, actually, how many people who've been 'diagnosed' with ME/CFS/Fibro have had lupus ruled out as a diagnosis. From what I've read, it's more common than Rheumatoid Arthritis, but rarely diagnosed accurately.

I was tested for Lupus and went several times to the Lupus unit in St.Thomas,s hospital,London.Some of my tests were borderline but they decided it was not Lupus and sent me back after 18mths to the rheumatologist in S.wales who diagnosed then the fibro.I feel many of my syymptoms cross over too.
sharon x

somebody_else

Careful_with_that_Axe wrote: »

Funny enough, my Rheumy says I have Rheupus as my Lupus is not a definite dx as I don't have the anyti-N antibody in sufficient quantities. It's also atypical as I have so many cross-over symptoms. I am absolutely convinced thsat all auto-immune problems are linked in some way and the dx is only a label to hang on the most diagnostically obvious symptom. I also strongly believe in a heriditary element as Mum had SLE and developed lymphoma and lo and behold so have I.
One of my Sister's friend's husband is actually involved in research into this and I've given him my full medical history and a blood test as part of a study group.

I'm with you on all cns problrms being linked one way or another. I also hold a somewhat controversial belief that there's no such illness as ME. Before everyone jumps on me from a great height, I do believe that those who have been diagnosed with it are ill. The thing is, I know too many people who have been diagnosed with ME (and they're generally the ones who don't recover after a few months), who have subsequently been diagnosed with neurological or cns problems - anything from Rheumatoid Arthritis to a brain tumour in one case. All of it, as far as I'm concerned, points to there being something amiss in the brain rather than the mind (as, sadly, far too many doctors still believe).

Careful_with_that_Axe wrote: »

anyhoos, I must drink my tea and have my drugs of choice as my head is starting to pound. Damn my self-indulgentself and the wine at lunch.
Later my lovelies.

Okay, how many of us are either incredibly sensitive, or violently intolerant to/of alcohol?

At my worst I can't even eat anything that has a small amount of alcohol cooked in it. Haven't actually had anything stronger than tea or coffee to drink for years.

sharon59

bigzippy wrote: »

Ok... so, I've found out how to post pics now (by found out I mean CwtA told me )... so if you really wanna see what some of my paintings are like (the pics are pretty poor in some instances I'm afraid ) then I can show you... either on here or in PMs if teacher's gonna come out again...

General consensus required people.

(I also make/made jewellry etc so if you're all reeeeally nosey... )

would love to see how clever we all are -we could start a new thread to save getting told off for clogging up this thread.:T