Fibromyalgia?

[Gareth]

Hi there,

Just wondering if there are any fibromyalgia sufferers out there or anyone who knows about the condition? I have been trying for 18 months to figure out what my strange symptoms are all about, and because I have a history of anxiety, have come on here at times to complain about how I am feeling.

I am now pretty sure I've identified fibromyalgia as the cause of my problems. If you look at the below link it has a good clear explanation of the condition:

http://www.everydayhealth.com/fibromyalgia/101/fibromyalgia-diagnosis.aspx

I meet the following diagnostic criteria:

Pain: I am in constant pain in my neck, trapezius muscles, forearms, calves of my legs and thighs, with intermittent headaches and pain in my feet, hands and chest. I have very tender muscles, in fact recently, even sitting down for long periods causes pain in the muscles of my backside and back. If I lean against a hard chair it really hurts, for example.

Fatigue: I feel drained of energy constantly and have constant brain fog and inability to concentrate. My brain feels slower and my thought processes much more difficult than ever before.

Sleep disruptions: While I DO sleep, and I sleep for long periods of time, I never wake up refreshed or rested, I always feel like I've been boxing all night.

Digestive problems: In past year or so I've had a couple of bouts of GERD (acid reflux).

Weight gain: In past six months I've put on about a stone, through no change in eating or drinking habits.

Decreased physical functioning: I struggle with movement. I feel weighed down, like my muscles won't respond to my brain. My body is slow, and tense, and achy, and stiff, all of the time.

Other changes in health: I match all of the following; light-headedness, dizziness, anxiety, depression, headaches.

I should also mention that I have tested positive in a recent blood test for raised "anti-nuclear antibodies" which indicate a lowered immune system, and thought to be linked to conditions like fibro and CFS.

Seems I fit pretty well. It is actually only recently becoming acknowledged that men get this condition, it was thought to be a woman's illness for a long time.

Anyone got any insight / thoughts / experiences on this?

Many thanks,
Gareth

[KK77]

I have been diagnosed with fibromyalgia although in a lot of men this is much more regional in terms of pain distribution and falls under chronic myofascial pain syndrome rather than the more global pain women tend to experience. I think there's an astounding ignorance of this condition, especially in men, and I have researched painstakingly for the past few years in order to understand and treat it myself.

Have you been referred to see a rheumatologist? The one I saw refused to call it fibromyalgia - he preferred "regional pain syndrome" - and sent me to the pain clinic.

You are welcome to PM me with any questions Gareth.

[anthrokid]

Oh the joys of fibromyalgia and CFS. I suffer from both, I suppose it's hard to separate them. It took me a long time to get diagnosed, I was only 18 when it hit me and my doctor told me I was just a silly teenager going out too much and making myself sick. i saw a few doctors until one did a lot of tests and researched on a lot until she came across fibromyalgia and CFS as viable solutions. I was lucky enough that she's a very passionate doctor and she did everything she could to help me. She even sent me for brain and heart scans I didn't need just to ease my anxiety. She managed to find a CFS specialist in the area (it's not a very big thing here in Australia still so it's hard to find a specialist in either field) and he was really helpful. I also suffer from anxiety and see a psychiatrist because the anxiety actually seems to add to the CFS a lot. I actually believe that the three are very closely related. Wish I could prove it though, might do my thesis on that!

Maybe try and see if you can get in to see a specialist. They're much more udnerstanding and helpful than most doctors.

[dorabella]

What you are experiencing are classic fibromyalgia symptoms - similar to what I was suffering with when my doctor diagnosed it. I had never heard of it but have researched it since and found various sources of information on it.

I think it is regarded as a predominantly female affliction since it is linked to depressive illness and an anxiety state - more common in women than men - but its effects can be just as severe in both sexes. There are all sorts of things that can trigger a prolonged spell of fibro pain and you will find that it waxes and wanes - in my case I find it is triggered by extremes of weather - either extremely cold temperatures such as we are currently havingorthe hot humid weather during the summer. Sometimes stress can set it off or repetitive activity such as overuse of a keyboard which can play havoc with arms, hands, chest and back. I find that the GERD which you mentioned usually accompanies this.

If you are looking for information on your condition there is a quite informative site which also has a forum for fibro sufferers:

http://fibromyalgia-symptoms.org/

In terms of reading matter, most of the erudite stuff comes from the States where quite a lot of research has been done. Here are a couple of examples which you might investigate:

Don Goldenberg "Fibromyalgia. Understanding and geting relief from pain that won't go away", Piatkus: 2002
(quite a good volume with plenty of real life reference points)

Devin Starlanyl and Mary Copeland, "Fibromyalgia and ChronicMyofascial Pain. A Survival Manual" New Harbinger Publications: 2001
(this is the Fibromaylgia bible and very instructive)

Claudia Marek "The First Year:Fibromyalgia. A patient-expert guide for the newly diagnosed" Robinson: 2004

Jenny Fransen and Jon Russell "The Fibromyalgia Help Book. Practical Guide to Living Better with Fibromyalgia" Smith House Press: 1996
(good practical advice book for coping with the effects of fibro)


What you will come to accept as time goes on is that this is a permanent condition that will have its bad spells and will at times ease off. Youjust have to learn to live with it but you will be able to predict when a spell is coming and how to survive its worst effects. I've put up with it myself for nearly 15 years and it has lost the grip it used to have over me both mentally and physically - now I can deal with it and not allow it to have an undue negative effect on my life.

Trust it will be that way for you. And don't forget-you canalways raise questions on this site - I and others will be able to help and advise.

[harasgenster]

Could be, although my Mam suffers from fibromyalgia and is in very extreme pain, enough to make her vomit, in fact she was on tramadol for a while. So it could equally be anxiety as this can cause all of your symptoms as well, but to a lesser degree.

Only way to find out is to see a consultant rheumatologist (except spelt correctly...).

Good luck, I hope you don't have it!

[ronski]

Hi Gareth
Yes it looks as though you fit the criteria for fibromyalgia. I have ME/CFS and it is very closely related to Fibromyalgia. I have major brain fatigue but my worse symptoms are exercise intolerance and severe post exertional malaise. My illness started after a Hep B injection and I started with Chronic Hyperventilation which soon led to major symptoms and sensations much as you describe. Research is showing that a lot of ME/CFS and fibromyalgic sufferers have this form of breathing pattern. I believe in part it is responsible for the agitation, anxiety and panic attacks that most of us suffer from. Try the foggy friends or brain fog forums for more advice. Also a good American site is called Phoenix rising which gives loads of current information. I hope this helps.

[JaneC]

Don't want to start another thread, so hope you don't mind me posting this here, Gareth. Do any of the rest of you CFS/ME/Fibro sufferers suffer from leg spasms at night? I had a horrible night last night being woken up by them all the time. Dr Google (sorry) tells me it can be a CFS/ME/Fibro thing - which is better than the alternative of thinking I've "caught" MS off my husband :doh: – but I'd still like to hear if other people have experience. Thanks x

[Tero]

Hi Gareth
Yes it looks as though you fit the criteria for fibromyalgia. I have ME/CFS and it is very closely related to Fibromyalgia. I have major brain fatigue but my worse symptoms are exercise intolerance and severe post exertional malaise. My illness started after a Hep B injection and I started with Chronic Hyperventilation which soon led to major symptoms and sensations much as you describe. Research is showing that a lot of ME/CFS and fibromyalgic sufferers have this form of breathing pattern. I believe in part it is responsible for the agitation, anxiety and panic attacks that most of us suffer from. Try the foggy friends or brain fog forums for more advice. Also a good American site is called Phoenix rising which gives loads of current information. I hope this helps.
I was not aware there was a connection! Sometimes there may not be, I have had fibromyalgia, the muscle pain part for some 20 years, my peak anxiety symptoms are new, though I may have had some general anxiety some 25 years back.

I take amitriptyline for the fibromyalgia. It is cheap, not sure it is effective, but does me no harm.

[Layer]

Hi Everyone

I'm so glad I found this website. I was totally unaware of Fibromyalgia until I decided to enter my symptoms on Google a month or so ago, then I recently came across this site. It has been a helpful read.

My symptoms started around 7 years ago. It began with pains in my calves and quickly spread to around every corner of my body, this all coincided when I was suffering from alot of work related stress and anxiety. I had a few blood tests and visits to the docs but never came up with anything.

I mostly suffer the pains in my calves on a daily basis. Aswell as my feet and thighs. I go through intermittent pains in my biceps, forearms, hands, rib cage, shoulders and neck. Like the original poster, just sitting down causes me pains in my backside and back (even while writing this). The pains can be anything from dull muscle aches to burning sensations. I also suffer from more pain from repetetive tasks.

I often cannot wait to take my trousers off at night because of the utter irritance they cause me. I also suffer from restless leg, I'm often sat watching tv and I'll be shaking my legs like mad...(drives the wife crazy). Pins and needles in my feet also give me alot of grief.

Fibrofog also causes me problems. I can be mid conversation with somebody and all of a sudden I cannot remember an everyday word, which causes me to stutter around thinking of another word of the same meaning, quite embarrasing at times.

I suffer bad sleep patterns also. Sometimes waking up in manic sweats, but will feel wide awake, then during the day all of a sudden I'll become really tired, low on energy, body fatigue and generally really worn out, especially with the body pains.

I don't really suffer with any digestive problems right now although I suffer from intermittent stomach pains, which I also saw the doctor about, to which he prescribed me some tablets for IBS.

My family also have a terrible history of Arthirits, my mother is writhered with reumatism, both of which I believe are all linked in some form.

I guess I have come to terms with my strange symptoms over the years and just get on with life, although it can be hard when the pains really bad, which don't help during changes of the weather. It was at Christmas when my pains were worse that I first researched the net and came across Fibromyalgia and I seem to fit most the criteria, although I do understand that it is more common in woman. I feel I have alot in common with Gareth (original poster)

Best wishes...

[kah]

Hi,

Your symptoms sound very much like CFS/ME, which I was diagnosed with last June. I found a fantastic website which has helped me through some extremely difficult times http://www.postviralfatigue.me.uk/. There are people on there with Fibromyalgia too, it might be worth a look.

K xx

[Layer]

Thanks Kah, I'll take a look.

[Eggy]

I have always wondered if i have this, I get:-

*Tenderness in the inside of my elbows and top of my arms
*Neck aches
*Shoulder blade pain/tenderness
*Headaches
*Knee pain
*Stomach problems
*Fatigue

And a few other things.

[JaneC]

Funnily enough Eggy, if you look online at a diagram for supposed fibromyalgia trigger points for pain, you're covering quite a lot of them - elbows, knees, neck shoulders - and fatigue and IBS seem to be connected to both fibro and CFS/ME. Worth having a word with your doc but it's not something alot can be done about x

[Tero]

The treatments they have for fibromyalgia are less dramatic than for anxiety, so they are worth a try.

[Eggy]

Funnily enough Eggy, if you look online at a diagram for supposed fibromyalgia trigger points for pain, you're covering quite a lot of them - elbows, knees, neck shoulders - and fatigue and IBS seem to be connected to both fibro and CFS/ME. Worth having a word with your doc but it's not something alot can be done about x

Having just looked at a diagram i can honestly say i get pain in those areas.

I get pain inside the elbow, knees, neck, shoulder blades, bottom of my back, chest and more.

[Tero]

Had not seen the diagram for a while. My points seem to be in the upper leg as shown in the back view. Some spots also near the upper chest near the neck at the start, many years ago.
http://www.thearthritiscenter.com/images/fibro_pts.gif

[Eggy]

I definitely think i should mention Fibromyalgia to my GP as if you look at my symptoms:-

*Chest pain
*Headaches
*Throat Pain
*Back Pain
*Shoulder Blade Pain
*Knee Pain
*Abdominal Problems
*Fatigue
*Unrefreshing Sleep
*Shortness Of Breath
*Cold Hands

It's a possiblity.

[JaneC]

Don't think there's any harm in mentioning it at all Eggy x

[AylesburyCPFM]

..... I also suffer from anxiety and see a psychiatrist because the anxiety actually seems to add to the CFS a lot. I actually believe that the three are very closely related. Wish I could prove it though, might do my thesis on that! .....

Hi Amiee, there are proven links between anxiety and chronic illnesses like CFS and Fibro - excuse I can't post links yet, but try this without the spaces: chronicfatigue . about . com / od / whyfmscfsarelinked / a / FMSpsychology . htm
Sorry its more work this way, im only 5 posts away from being allowed to post links... Hope that helps anyway!