Fibromyalgia - diagnosed

Unity

Yes, Yellowrock - I get this, as does my friend and we've both been diagnosed. I also get numbness in one side of my face that feels as if I have been to the dentist.

You mentioned TMJ and I just wondered if you've had any treatment for this? I was dxd a couple of years ago and the problem is getting much worse both in terms of pain and irritation with the (now) very loud clicking I get when I eat. I have read that TMJ is a condition often associated with fibro - yet another one of the many :rolleyes:.

daska

I get facial tingling , officially PVCFS (the neurologist didn't feel it was helpful to label it ME but it's less of a mouthful LOL), but TBH I've often wondered if my other boot might be more in the fibro camp. I don't get 'pins and needles' as much as a tingling and movable pain. Also have a tic in my left eye - been going on for about 4 months now, to join the tremors and twitches in my limbs and head. When it started I thought I was getting Parkinsons.

nearlyrich

I have FMS but most of the time I can live with it on pain killers and plenty of rest if not sleep. I had an episode of TMJ a few years ago I thought my head would explode it was so painfull. I find cold weather makes me worse and the sunshine and warm weather makes me feel more human, I do a demanding job and some days I just can't handle the pain or the brain fade. Hope everyone is managing OK and best wishes to all for 2010.

YorkiePud_3

I am soooo sorry to hear of your diagnosis ... I have fibromyalgia and have had it from 1993 after a car accident (I'm now 38, walk with a stick, have very limited mobility, am in pain all the time and generally hobble along like a 90 year old ... tough, but you get used to it!)

A lot of doctors just don't believe in fibromyalgia.
Some believe people are malingering ...if you break your arm and have to have a pot on then you have something that people can actually see, so they know something is wrong with you, but if you ache and hurt then there is nothing to show so basically (as my ex doctor said to me), people have to take your word for it.

It can be a very lonely road to walk ... and yes, people with it get down and depressed but not because they have depression, but because they have so much to cope with day to day.
A lot of doctors say it is the depression but it isn't ... nobody wants to be in agony every day of their life, having to limit what they do ...

In America this has been a long-known illness (and it IS an illness ... !!! It isn't in your head as you may be made to feel) ... they try so many things to help it, from supplements to take even down to massage and exercise.

BUT I warn you now ... what works for one person will not work for another in most cases. This is a horribly individualistic illness ... some people find great ease in massage but I can't be massaged ... it is just far too painful. If they even touch the "tender points" (the ones you found you had ... ouch!) then you are in agony.

I don't actually go to any places that are crowded i.e. shopping malls ... if anyone manages to knock against me and hit one of those the pain is terrible. People look at you as though you are putting it on, but believe me, hit one of those and you end up poleaxed!

There will be days you can hardly lift your head from the pillow ... days when your legs just don't work ... you won't hardly be able to move your arms, and you WILL wonder what on earth you can do.

I take 28 tablets a day JUST to keep me mobile. That doesn't mean to say they alleviate the pain every day! As you will know by now, any movement you do aggravates the pain that is already there ...

But what you have to realise is that you will have pain whether you do anything or not ... so alter the scales a bit ... balance it out ... if it is worth going out and doing something, go do it!!
Yes, you will hurt but you will hurt if you stay home too, so you might as well get something out of it ... see what I mean?

Someone once told me fibromyalgia is a bank ... but not a bank full of money ... a bank full of energy ... each day you get topped up with a certain amount of energy and you have to organise things so that you never get withdrawn ... i.e. do what you can and learn to say NO!!

It is no good pushing yourself too far so that you totally deplete your energy levels (and dealing with pain does that!) ... so you have to organise your life ... i.e. the day after you go shopping, keep clear ... don't schedule anything .. you need the rest that day ... if you have an afternoon appointment for anything then go easy on yourself that morning ... do you see what I mean?
In a way you have to save yourself for the times you do have to do something you can't avoid ...

But most of all, do not be afraid to say no to people ... if you are absolutely shattered and hurting then say to people, "I would have loved to come with you but I really have reached my limit ... maybe next time!" ... and don't feel bad saying that ... YOU are the one dealing with this and people don't understand what it is like until they go through it or something like it ... so just explain to them and they will understand *S*

Take care and keep smiling .... !!

shabbyrose

I have fibromyalgia and ME(CFS). You have to learn your limits. Learn to pace yourself. It will save your life.The hardest thing to learn is do what you can when you can. This really helped me when I was first diagnosed to explain to people why I needed help. http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

Trialia

Rose, the Spoon Theory is always good for an explanation. Well, nearly always. Christine had a good idea on that one...

I'm unlucky enough to be in the roughly 30% (don't ask me to cite the stat - didn't pull it off the top of my head, but I can't remember which site it was) of people with fibromyalgia who have it severely. I've always wanted to be a librarian, but thanks to the impact of fibro and my other illnesses on my health and general well-being, I can't even manage part-time college, let alone part-time work, anymore. I can just about take care of myself, though certain things like personal hygiene go to hell if I catch a cold on top of all the rest. It's a very depressing way to live, but day-to-day seems to be the best way to manage it without giving in to complete despair.

Some people can work with it... some can't. I wish I were in the former group.

Unity

Trialia wrote: »

Rose, the Spoon Theory is always good for an explanation. Well, nearly always. Christine had a good idea on that one...

I'm unlucky enough to be in the roughly 30% (don't ask me to cite the stat - didn't pull it off the top of my head, but I can't remember which site it was) of people with fibromyalgia who have it severely. I've always wanted to be a librarian, but thanks to the impact of fibro and my other illnesses on my health and general well-being, I can't even manage part-time college, let alone part-time work, anymore. I can just about take care of myself, though certain things like personal hygiene go to hell if I catch a cold on top of all the rest. It's a very depressing way to live, but day-to-day seems to be the best way to manage it without giving in to complete despair.

Some people can work with it... some can't. I wish I were in the former group.

Hi Trialia, good to see you still posting :T. I agree, also being one of the severely afflicted and one of those for whom fibro is a secondary condition - rather than a primary one. I'm afraid there are some days when I can't even bear to brush my teeth, because the vibration is just too much . Thankfully these days I am more able to see what stage of a flare I am at and can more or less predict when I will begin to feel better, or perhaps now I know that an individual flare, unlike the disease, not going to last forever.

Just at present the sleep disorder is really getting me down - I'm dreaming in vivid Technicolor so even sleeping for twelve hours as I did last night has left me needing naps during today. The fatigue is horrendous, but I must pull round by Thursday as I need to get to hospital for 8 am for an epidural to block my sciatic nerve.

I hope everyone has a better 2010 - and although I doubt we will see a cure for fibro, we may fine better ways to cope.

mommame

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. That will be when the admin at my surgery get 'a round tuit' as it's been three weeks and the hospital hasn't received the referral letter yet :rolleyes:. I know because I rang and checked and they asked if the surgery could fax the details over . I have a good GP but the admin staff are a bit hit and miss. It's got to the extent where I don't phone the surgery, I fax everything, even my repeat prescriptions, so that I have a record - but even that is only any good if they remember to turn the fax on :rolleyes2.

I've managed to struggle on regardless for the past 13 years or so and then a couple of years ago things started to deteriorate badly with sudden hearing loss, blood pressure that went from very low, to very high (requiring treatment) and hypothyroidism.

I've been housebound for the last twelve days due to overwhelming fatigue, swollen glands, sweating one minute, chills the next, as well as a massive increase in pain levels and more recently the right side of my face going numb including my ear (just like I've had local anaesthetic at the dentist). I've got a permanent headache, can't put my contacts in because of eye pain, I can't hear at all in my right ear even with the digital aid and the soft tissue in my feet is so painful - it hurts to stand upright. I have lumps all down my shin bones that hurt like hell and the previously dxd Raynaud's is more of a bother as well.

Since the docs reckon fibro is not degenerative, I have become "an interesting case" - a term which drives me mad :mad:. Tbh I am a bit sick of being a guinea pig, I'd like to be a hamster for a change, then I could run on the wheel :rotfl:. As if :rolleyes:.

Good luck to everyone in finding the treatment you need to help you cope.

:wave:

You have just described my life in a nutshell, I have every condition/symptom you just listed and I hobble around like an old man and my inner ear is really painful for nearly 5 months yet there is nothing to see inside,my eyesight is going down hill rapidly and the eye pain wakes me up and I then cannot open them cos they are so dry they are stuck to my lids,its like having glass splinters in my eyeballs.

I have a dx of psoriatic arthritis, have been on embrel for nearly 2 years ,on methotrexate,sulphsalazine,Thyroxine,take the spray for angina,tabs for high blood pressure,carbamazapine for nerve pain,astma pumps etc,and all within 4 years.
All of these conditions are all immune system related so it must follow that they must have similarities to each other.

I am just fed up of feeling that this thing is consuming me so I have made a new years resolution to fight back and start being a nuisance at my gps to get me on to a pain management programme and get my life back.
Sorry dont know whats wrong with my settings but this has all come out as one big ramble but I did use paras honest!

mommame

Oh and I too have tgma and arthritis in my jaw, a large mass on the left temporal lobe so everytime I turn my head I can feel and hear the crunching in my head and neck.
Oh and I meant that fibro/psoriatic arthritis/lupus etc are all from the same stable so to speak so it follows I suppose that we may display signs of each one at any given time.

kompess

It was my Physiotherapist that initially suggested it might be Fibromyalgia I had. I had all these different symptoms along with unexplained widespread pain and she put them altogether and came up with that.
I went to my GP and said what Physiotherapist had told me and he agreed but that I would need confirmation from Rheumatologist. I eventually got diagnosed Nov 08 after years of suffering.