Fibromyalgia: Lyrica?

galah

Hi all,

I have suspected fibromyalgia (the doc has not confirmed it 100%, but suspects it...) and I am starting pain management soon, and will be put on a course of Lyrica - anyone else out there who is using it, or has used it, and can tell me a bit about the (obviously subjective) effects? Is it working? Any nasty side-effects?

Cheers
galah

tbh

Hi Galah -

if it's not too personal, can you let us know a bit about how you came to be diagnosed - symptoms etc?

You, of course, don't have to supply those details, but it's useful for
people who don't know anything about it, plus raises awareness... thanks

tbh.

galah

well, it's a loooong, long story, involving a lot of doctors, useless specialists, an MRI scan, couple of X-rays, lots of visits to the physio and osteopath, and finally a good GP who seems to know what he's doing...

It started a long time ago with problems in my back (caused by a car crash), and spreading from there to problems in my neck, arms, elbows and wrists - constant pain, pins and needles, numb fingers, and medication would only temporarily relieve it. I was diagnosed with tendonitis, carpal tunnel, hemochromatosis (which i didn't have), back spasms, and three herniated disks, which, however, do not impinge on the nerve (according to the MRI), and therefore should not cause all the problems I'm having.

Fibromyalgia is one of those rather diffuse diagnoses, outlined by pain that usually "wanders" and is hard to pin down, with no "real" physiological cause - even though I do have three herniated disks in my cervical spine, which "could" technically be the cause of a lot of the problems. One pretty good indicator is tenderpoints, certain points in the body that respond strongly to pressure - if you have 11 out of 18, it's usually fibro.

I am still not 100 % sure it is actually Fibro, but my GP is fairly certain. There's a lot of information on the net, and slowly fibro starts to be more recognized and diagnosed more often, where previously patients would have been turned away, saying that they "imagined" the pain.

Sleeping patterns have a lot to do with it - patients wake up after a nights' sleep feeling "shattered", even though they should have gotten the rest the body needs - it just seems that there is some interruption in one of the sleep phases, so the body cannot relax totally, causing muscle pain and general tiredness.

There's a whole long list of symptoms, including something called "fibro fog", where you just seem to forget things, like words, or people's names, stuff like that...One big proble is sometimes excruciating pain that will completely interfere with your life - so bad that you simply cannot get up, or move. Other days, there's just some numb "background" pain, which is tolerable. No way to predict when the nasty stuff is going to happen, though...

All this is "off-the-cuff", I'll post some links with complete information about resources on the net later.

There's nothing much that can be done to relieve the problems bar medication (and, if possible, light exercise to counteract stiff muscles) - and I've tried a lot of that stuff, including cortison, valium, sleeping pills, anti-depressants (low dosage to help with the sleep cycle), anti-inflammatories, heavy-duty pain killers, and now Lyrica (which I'm not sure about).

tbh

interesting read mate, sorry for your troubles. I guess then that this is something brought on by the accident, rather than something you are born with?
How is the pain now, is it a constant thing? There maybe other readers who have experience with long term pain management who can give you some advice, fingers crossed - hope things start getting better for ya.

galah

Here's a very good (long!) article about fibromyalgia

http://www.emedicine.com/med/topic790.htm

and another one

http://www.emedicine.com/pmr/topic47.htm#targetMPS

By the way, I forgot to mention symptoms like the constant headaches, and the fact that my muscles in my shoulder are rock-hard, and so tense I'd scream if anyone were to touch them...

littlebug

Hi Galah,

I don't know anything about lyrica but I found this fibro board today

http://www.healthboards.com/boards/forumdisplay.php?f=55

and I see there's a post on Lyrica there. That particular post mightn't be much use but maybe a trawl through previous posts will bring up something useful.

P

galah

hey there!

I actually started my Lyrica treatment, and - it's amazing! I've had the first pain-free (yes, completely pain-free) day in years!!!

Feel a little dizzy, and a bit tired, but I can handle that! That's nothing compared to the excruciating pains I experienced beforehand ;-)

The only problem is the price of the tablets - 56 Euro for a week's supply!!!!

So my finances will be in pain very soon (did apply for the drugs payment scheme, but it seems the medication is way overpriced here in ireland - will have to find a way to get them cheaper on the continent, somehow ;-)

Will keep ya posted on the progress (if anyone is interested, that is) - but so far, it's been fantastic!

galah

littlebug

That's great news Galah. I'm delighted it's working for you.. you were having a really tough time with the pain. That's really tough on the finances though! Could you work out a way to get it from Germany?
Being on the milder end of the fibro spectrum than you I'll continue to avoid drugs for now. I've been out cycling a bit and there's a definite improvement but then again I always am a bit better in the summer time anyway. Autumn/ Winter will tell if my new super exercise regime has really made a difference!

TBH I've just read your post further up the thread. I've never had an accident and my dad was diagnosed with fibromyalgia about 10 years ago (after about 15 years of trying to get a diagnosis)... so it may be that there is a genetic element.

tbh

thanks for that littlebug, interesting stuff - the things you learn on this forum! And nice one Galah, glad to hear things are working out for you.

squeky

galah,

i was in a car accident and am under pain management doctor also and was put on lyrica but it didnt suit me at all, was fainting with it, headaches and lots horrible tings. im currently having nerve block to try help me, im having all same symptons as you. was nerve blocks not suggested to you.

dlofnep

Hey, I've had suspected M.E/Fybromylagia for the past 6 months. I get wicked pains in my leg muscles and awful nausea. I don't however feel fatigued.

I like you have been in and out of hospital. Countless visits to local doctors for blood tests, nothing. 6 visits to the hospital for more blood tests, ultra sound scan, xray.. All nothing.

I'm going to an allergy centre tomorrow to get tested for food allergies. I'm also getting the metalic fillings out of my teeth incase it's mercury poisoning. Alot of factors can add up.

PoleStar

Just to clarify a couple of things as people recurrently say how they have been bounced from one unhelpful specialist to another who "dont believe anything is wrong" and then put it down dismissively as IBS.

Firstly, as a doctor, I can confidently say to you that actually we dont know everything and no, we are not psychic. We can only investigate patients within the limits of current technology and expertise and for this problem that often means a colonoscopy and an OGD which is the camera down the top end.

If these are normal, then often a patients complaints are attributed to irritable bowel syndrome. The reason for this is 2 fold. Firslty there is no specific diagnostic test for IBS and secondly it is a diagnosis of exclusion, i.e., you exclude other possible causes such as inflammatory bowel disease (crohns and ulcerative colitis, both of which are completely different to IBS). If other causes are excluded then the symptoms can be fairly safely attributed to IBS.

As for managment? Again there is no specific treatment for this condition but for all you sufferers I can probably safely say that the best possible treatment is dietary, i.e. go see a good dietician.

Another point to mention is that doctors will often ask a patient if they are depressed in this situation. The doctor is not being dismissive. The reason they often ask this is that depression and irritable bowel syndrome are associated with each other from epidemiological surveys so this is the logic behind him asking this.

Hope this helps

Trinity

I was diagnosed with this 3 years ago. At first they thought it was arthritis as the pains were so bad.

Have to say though i never took the medication. I did attend hydrotherapy for a while, the pain was excrutiating but after a while i was able to do the moves without too much pain. I also had some physiotherapy. They found also i had fallen arches and measured me up for supports to put in my shoes but they never arrived!

I was on my own with a 4 year old boy and pushing him round in a buggy etc didnt help so i had to be careful how much strain i put on myself physically and mentally. i still suffer in winter with the joint pains but not as bad. Fatigue comes and goes but i would rather see it through than go on meds.

I found exercising, eliminating as much stress as possible and trying to have a bit of fun instead of worrying all the time (in other words i got a life and had a laugh!!) really helped.

Its certainly not as bad as before though i couldnt even lift the kettle with my wrists they felt as though they would snap!!

It does improve, at least it did for me and i hope it does for you too.

LegacyUser

i was put on a course of this medication 2 years ago as it was suspected i had fibromyalgia. i had no side effects from it and i usually react bad to medication, but i didnt think it helped, but i didnt have fibromyalgia i have been diagnosed with Myasthenia Gravis so it wouldnt help with this.
i was told by so many specialists i had fibromyalgia, ME, i was then being treated for MS, until one day i finally collapsed and and was paralyised for 2 weeks unable to speak or breath that they finally started looking at other possibilities,
i had all the tests for Mg, which came back positive and was started on medication. i dramatically improved withinh 6 months.
it was so annoying to think i was in so much pain with weakness and fatigue for 3 years, when all along i could take some medication and have massive improvment, for me i wish i never settled for thinking i had fibromyalgia as i feel i lost out on 3 years of my life. B ut now i am on treatment for MG i have been able to return to a somewhat normal life, i still get extreme weakness and fatigue but at least i know what causes it and how to help it.

Eseram

Hi Galah,

I have just come across your post today.Have you since posting gone on to do your pain management course?.I am interested in knowing because i have recently completed one myself,i would like to know did it help you.I have been taking lyrica for two years now and i find them very good,but like most drugs they give me side effects.

I hope your doing well.

galah

Hi there,

just spotted your post there, sorry for the delay!

I'm still on Lyrica (albeit a lower dose, gone down from 3 a day to 1 a day), and I think it still helps - the pains are not as bad as they used to be, and less frequent.

I have not experienced any side effects as such, but then I hardly ever got side effects from anything, really...Actually, I'm even able to exercise these days (couldn't do that for a long time), so I guess I'm doing ok ;-)

I'm just starting to detest the price of those pills, it really annoys me having to pay so much...

Hope you are doing ok as well!

kangaroo

zon22 wrote: »

i was put on a course of this medication 2 years ago as it was suspected i had fibromyalgia. i had no side effects from it and i usually react bad to medication, but i didnt think it helped, but i didnt have fibromyalgia i have been diagnosed with Myasthenia Gravis so it wouldnt help with this.
i was told by so many specialists i had fibromyalgia, ME, i was then being treated for MS, until one day i finally collapsed and and was paralyised for 2 weeks unable to speak or breath that they finally started looking at other possibilities,
i had all the tests for Mg, which came back positive and was started on medication. i dramatically improved withinh 6 months.
it was so annoying to think i was in so much pain with weakness and fatigue for 3 years, when all along i could take some medication and have massive improvment, for me i wish i never settled for thinking i had fibromyalgia as i feel i lost out on 3 years of my life. B ut now i am on treatment for MG i have been able to return to a somewhat normal life, i still get extreme weakness and fatigue but at least i know what causes it and how to help it.

Thanks zon22 for sharing this.
I have ME which, amongst other things, has caused Fibromyalgia-like symptoms.

Unfortunately as the ME wasn't diagnosed, I was continually told to exercise which made me worse and worse and I've been housebound for over a decade.

Anyway in the ME community it's often mentioned that people should keep an eye out in case they've been misdiagnosed. One book that is regularly recommended is Dr. Charles Shepherd's "Living with ME" which has a chapter "Other causes of Chronic Fatigue" which has 32 pages on other conditions to look out for (and co-morbid conditions like Fibromyalgia, IBS, etc). You'll be glad to hear there's 16 lines on Myasthenia Gravis.

Anyway always interested to hear such stories - have come across a few myself for various conditions over the years; unfortunately often the reverse is the case and people with ME can wait many years to get diagnosed.

Best wishes to all struggling with any long-term illness.

charlieroot

kangaroo wrote: »

You'll be glad to hear there's 16 lines on Myasthenia Gravis.

Apologies if this a stupid question - but how is Mysthenia Gravis related to ME?

Noel.

kangaroo

Hi Charlieroot,

zon22 was annoyed that it took them three years to diagnose Myasthenia Gravis and that they'd been previously diagnosed with fibromyalgia, ME (ME and Fibromyalgia are somewhat similar so not sure if these were separate diagnoses or the one doctor said they had both).

My point was there is an effort in the ME community to alert people that there could be something else that is causing the symptoms, including something else more treatable.

Also a booklet was circulated to basically all Irish GPs and around 600 consultants in 2006 which included a list of exclusions which included Myasthenia Gravis:

Exclusions: Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison’s disease, Cushing’s Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse. Exclusion of other diagnoses, which cannot be reasonably excluded by the patient’s history and physical examination, is achieved by laboratory testing and imaging. If a potentially confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.

charlieroot

Hi Kangaroo,

Thanks for your answer. Makes sense. I thought though that Myasthenia Gravis was relatively easy to diagnose using the Tesilon test? Anyone here with experience of MG like to comment. Thanks.

Noel.

star-pants

Hi there,
Just thought I'd pop in with my experiences also,
My mother has rheumatoid arthritis - has had it for 24 years, very severe. She (last year) got told she may have fibromyalgia also and was put on lyrica for it. They don't really suit her, she will actually fall over - her balance is affected and they make her feel stupid.
I've had bad joints etc for the past 12/13 years (slowly spreading) (I'm 24). I got the usual 'they're growing pains etc' but after this long I really started to wonder. I'd had xrays and everything and nothing showed up. I had blood tests - again nothing showed.

In 2006 it got to its worst when it spread to my wrists (and subsequently elbows) - it had been in my knees/hips/lower back mostly. I had more blood tests, xrays, poking etc. Rheumatology insisted it wasn't that because even though it's genetic and I had some symptoms - I got no swelling, which is classic to arthritis.
Final appointment there in December 2007 - head honcho came in - poked me, gave me a booklet on fibromyalgia and discharged me.

I concur with the sleeping pattern thing, he did say they are doing more research into it being linked with that. I do get that, wake up so sore and tired.
I tend to dream, a lot, and thus my sleep isn't restful.

I've not been prescribed any meds but I'm thinking of taking up swimming as that is supposed to be good for your body in this state. I also take glucosamine & chondroitin supplements as I find they can help. (btw obviously check with GP before people take these to make sure it's ok etc)

It's not a nice thing to have but if these tabs are working for you then I'm glad

Pickles1992

Ive been on Lyrica since Christmas '07 for chronic back pain which Ive had for the past three and a half years. Im in constant pain but I dont find these tabs any good. I do suffer with the side effects, weight gain, dizziness, dry mouth.etc but Im also on other painkillers (Zydol) too. Ive had a disc taken out, and 2 spinal fusions but still no relief, Im now waiting to see a Consultant in Pain Management. Ive had the spinal injections, the works!!!!!!!! but to no avail. So Im hoping that this pain management will give me some relief.
By the way I get my meds thru the drug scheme...............ie I pay e90 per month and the rest the Government pay..............................dont we all get for this????????!!!!!!

wada

My sister inlaw suffers with fibromaylgia, but also with pulmunary hypertension she needs a heart and lungs transplant and has 4 years left to live without one.

She is in an electric wheelchair and needs 24 hour oxygen. With out these she would be dead as if fibromaylgia isnt bad enough.

W0LFMAN

HI All, I was just Crusing around the boards and I spotted a Word that has something to do with my Aunt practice in Cork.
Shes a Doctor in Cork and Deals with fibromyalgia I know she's had some great success in this area and is always very approachable.

http://www.fibromyalgiaprogramme.com/contact.asp

This is her contact details..

Just thought I'd post for information...

star-pants

Update - my mother's been on lyrica for a good while now, and even though it did affect her at first (dizzy etc) she's balanced out a bit now, and they seem to help her, especially her chest which can get quite bad.

I've been on amytriptyline for a month or two - which helped the pain but I broke out in the rare rash that you can get (not nice, like having the pox) so I had to cut down & stop them. Then the doc put me on prozac - which for the first month had me emotionally numb which was very very odd feeling altogether! but I'm on month 4 of it now and it's settled a bit and it is helping the pain (not helping me sleep at all though). And I had a very upset stomach for weeks (reckon it was them) so I was on nexium & motillium for about 3wks (I'd inflammed stomach lining) but it seems to have settled at the moment. Starting to eat again slowly \o/

LegacyUser

Hi Galah

i have just made a decision today to come off my lyrica & revert back to my previous medication! I started lyrica in summer, great for pain, but have found over the months i've become quite 'drowsy' all the time, with my memory not great either, not to mention going into a dead sleep at night that scared me! On top of that I've piled on the pounds! A big sacrifice for me as i suffer with a bracial plexis injury with nerve pain all day every day but i need my mind to be in the here & now.

hope that helps. not sure how i'll be dong tonorrow but at least i'll be wide awake!!

cheers
mart

LegacyUser

Hi Zon 22,

I know it's been a while since you were on this board but I was doing a search for Myasthenia Gravis and came across your post. Just want to let you know that there is great support for people with MG from the Myasthenia Gravis Association. They have a very good information pack for patients and doctors. If you haven't been in contact already you can email MGA at info@mga-charity.ie and they will send out a pack to you.

Hope this helps.

Kathy

tbh

Unregistered wrote: »

Hi Zon 22,

I know it's been a while since you were on this board but I was doing a search for Myasthenia Gravis and came across your post. Just want to let you know that there is great support for people with MG from the Myasthenia Gravis Association. They have a very good information pack for patients and doctors. If you haven't been in contact already you can email MGA at info@mga-charity.ie and they will send out a pack to you.

Hope this helps.

Kathy

thanks Kathy, I've added those details to the resources thread.

LegacyUser

Hi All

I was just searching for info on Lyrica and pregnancy (I am hoping at SOME point to have children) and came accross this forum. I will make my story short, I started having pelvic pain 14 months ago started with my period so thought it was just a bad one and pain never went away. GP refered me to a gynae, (who is just awful btw) got a hysteroscopy and laperoscopy and all these were negative bar small amount of fibroids and tiny amount of endometrosis, which he thought was not attributing to the pain. Was then refered to a gastroenterologist and had endoscopy, colonoscopy and barium enema, again all negative. In December the pain got so bad my husband brought me into A&E in St. James's, I was admitted and another barrage of tests done, again all negative bar being very anaemic and inflammation markers in my blood being through the roof. I was then refered to a pain management dr, who is lovely but very slow and he put me lyrica, this really did seem to work for me although I am on the max dose (600mg) and I still have a lot of pain. I have had an epidural, 2 nerve blocks and another procedure into my back like a nerve block but nothing really seems to work out that well. I seen Galah's post and I was wondering what are the symptoms of Fibromyalgia and maybe this what I have. I have been off work since December as I can no longer function properly with the level of pain that I have. Any advise would be GREATLY appreciated.

Baba

Splendour

I've been doing some research on Vitamin D (D3 to be precise) and I'm amazed at what I'm learning about this 'not too often mentioned' vitamin.

I myself am treating a thyroid/adrenal disorder and, I'm just discovering, vitamin D is essential when treating autoimmune diseases.
I've discovered too that it is used in treating fibromyalgia (aka osteomalacia), chronic fatigue syndrome, muscle pain, arthritis...

Vitamin D isn't found in too many foods; eggs,fish( cod liver oil is a good source). Best way to receive vitamin D is from sunshine, which of course we don't get alot of in Ireland! Even if we did, many of us spend most of our time indoors and commute in cars or on buses so we aren't as much outdoors as our ancestors would have been.

So we need to supplement vitamin D. This vitamin should be taken alongside a calcium supplement. And naturally if taking any others meds, run this by your GP first...

psycho-hope

Hi everyone just been having a look through the forum and came across this thread, my mum has reumitoid athritis and fibomyalgia, she has been on lyrica for about 6 months now and finds its helping her alot, she found at first they made her very drowsey but she started on a lw dose and is now on 600mg a day and has adjusted to the side effect now