Fibromyalgia Information

hohDougRN

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Here is some short simplified information regarding Fibromyalgia (FMS) as per requisitioned by another AD member. Any in depth questions or request to elaborate further on any topics discussed herein can be PM'd to me or just in reply by post.

Fibromyalgia or FMS is a difficult diagnosis to make and is often done so by way of exclusionary process ruling out many other diseases which share the same overlapping chronic symptoms. Often diagnosis doesn't occur until months or even years after symptoms begin because doctors have excluded other diseases from physical exams, lab tests and radiologic proceedures. There are no real effective diagnostic exams or blood tests than can diagnose FMS. There is no generally accepted objective test for FMS.

Prevelance: FMS is significantly more common in women than men.

Symptoms you may be experiencing:

Chronic pain, headaches, extreme fatigue, Irritable Bowel Syndrome type symptoms, jaw pain, depression with anxiety, and sleep disorders are some of the most common symptoms in individuals diagnosed with FMS.
Problem is these symptoms mimic conditions such as rheumatoid arthritis, systemic lupus erythematosis, mutiple sclerosis, mononucleosis, and hypothyroidism among others.

When you have some symptoms listed above which may eventually lead to a diagnosis of FMS, a doctor will be performing a number of lab tests or radiological tests, not to diagnose FMS, but to first rule out other disease states mentioned above. Also these tests are done to confirm or rule out the following problems as well:

-Hormone imbalance
-Anemia
-Infections
-Muscle, nerve, bone, or joint disease (tests to help determine these would also include Electrical Nerve and Muscle testing, and Nerve conduction Velocity)
-Cancer
-Polymyalgia Rheumatica
-Other thyroid disease states

If your symptoms continue for a number of months and other disease states that have the same symptoms manifested have been ruled out, your physician may conclude a diagnosis of Fibromyalgia. Please understand that it often a significant amount of time before the diagnosis is made and sometimes misdiagnoses occur with fibromyalgia. Many patients end up seeing a number of physicians because answers and proper diagnoses have not been made. It is quite alright to change to a physician who is more educated with fibromyalgia or simply understands better your suffering and symptoms. Dont change a doctor thought just to obtain a diagnosis of your satisfaction and expectations. Also if you change or are referred to a specialist, make sure you have complete medical files on all the previous tests and exam findings to provide to the new physician. It will help prevent repeat tests and save significant time and even money in getting an appropriate diagnosis made.

These symptoms of FMS are shared with possibly very serious disease states and it is very important for the physician to be thorough and rule out these other possibilities first. Rheumatologists are usually a good specialist to see as they are very skilled clinicians with diagnosis of FMS and related diseases.


There are newer criterion coming out with physical examination in aiding with diagnosis of FMS. This physical exam is essentially a pressure sensitivity test where a number of points are tested symmetrically in different areas of the body including but not limited to: neck, chest, areas of the back and spine, hip, and lower extremities. This exam is not 100% effective with diagnosis, but when combined with other subjective signs and symptoms and length of time experiencing these, it can be an effective tool in making a proper diagnosis.

Treatments

Fibromyalgia is still an evolving disease and some care providers still consider it an ambiguous disease. There are a number of classes of pharmacologic drugs used to treat symptoms as well as other alternative therapies, but there is no cure for Fibromyalgia.

At this point I won't go further with medication regimens to treat FMS, but if you are very interested I can and will provide some insights. But please note it is always more appropriate to discuss this with your doctor who has complete insight to your medical history and current medications which may have possible interactions.

Risk factors and possible causes of FMS are all currently only theory still and are purely speculative. If anybody desires to know any of theses being researched and studied currently I will be happy to elaborate and provide further references.
 
Yeah, great info, Doug. I, too, was diagnosed with FMS about 10 years ago using the rule out procedure of differential diagnosis. They got it down to FMS or MS, and could not determine which it was, and took the "time will confirm" attitude based on some CT scan findings. I am currently beginning to experience some severe Raynoud's Syndrome symptoms, so it appears that the "time will tell" is quickly approaching.
 
Yeah, great info, Doug. I, too, was diagnosed with FMS about 10 years ago using the rule out procedure of differential diagnosis. They got it down to FMS or MS, and could not determine which it was, and took the "time will confirm" attitude based on some CT scan findings. I am currently beginning to experience some severe Raynoud's Syndrome symptoms, so it appears that the "time will tell" is quickly approaching.

Ewwww.....Raynaud's....yeah those symtoms can be yuk annoying sometime with making your hands or feet look purple, tingle and fall asleep, then to get the pain when those vasospasms release :( Hope it doesn't get too bad.
 
Ewwww.....Raynaud's....yeah those symtoms can be yuk annoying sometime with making your hands or feet look purple, tingle and fall asleep, then to get the pain when those vasospasms release :( Hope it doesn't get too bad.

Thanks. It will be whatever it will be. No sense sitting around worrying about what the future may hold. And MS is not the worst diagnosis I could get.
 
Doug - great info. I know this is something I have been wondering about. With my one leg I have gone through all kinds of testing with MRI's, CT scans, EMG's, x-rays, bone density scans and I'm not sure what all else. Over a period of 5 years, they could tell me what I don't have, but could never determine what it was and just gave me a diagnosis of RDS (repetitive stress dystrophy) or neuropathy. Now the lower back and right leg are having issues. I also have carpal tunnel in both hands and wrists, massive migraines, IBS, not sleeping, and other issues. When I get better insurance (September) I will be going to a new doctor (all other tests were done in Missouri and I have moved to Florida) and seeing what more they can come up with. For the time being, I am in constant pain and am having problems walking. I had been using a cane, but am moving to a walker soon. For the previous diagnosis, they gave me Cymbalta, but it never helped and I had to be weaned off. I was on it for 4 years before they would agree to wean me off. My pain is adding to my not being able to sleep and some minor (nothing I can't handle) depression. (I am doing coping mechanisms that I got from a co-worker to deal with it)

Such fun. Glad to know what to look for and what I need to know.
 
I just read your answer to my question regarding fibromyalgia. Thank you so very much, your post was truely informative. If you have further information on treatment regimens, I would certainly be interested in that as well. Thank you again for your help.
 
Thanks for the Fibro thread !!

I've been formally Dx'd with Fibro since 2008, however I've had it since at least 2004.

In addition to Fibromyalgia I also have:

Chronic Fatigue Syndrome - as a component of Fibro

Chronic Myofascial Pain Syndrome
Localized to my right shoulder/arm, neck & upper back- due to a car accident in 2004

Raynaud's Disease (Severe)
I was Dx'd when I was about 10years old - and since 2002 I've been taking 30mg of Adalat XL daily to help prevent/reduce attacks (I was having 3-6 attacks daily lasting 20mins-2hours each time)

Gilbert's Syndrome (mild) - which is a common, mild congenital, non-contagious, non-life-threatening liver condition

Osteo Arthritis
In my Right shoulder and possibly additional locations- due to car accident in 2004

and a number of other conditions.

I'm involved in a Fibromyalgia Education & support group in my city (fmswinnipeg.com) where we help others learn to manage their fibro with diet, exercise, as well as get advise from specialists who understand Fibromyalgia including: Yoga/Pilates instructors, Physio Therapists, lawyers & legal advisers who are disability specialists, dietitians/nutritionists and many other people who come in as "guest speakers" for our monthly meetings.
We're certainly not a "boo-hoo, poor me group"! - rather we're there to help each learn how to be the best we can be while learning how to manage our Fibromyalgia in a supportive environment (the group is open to ANYONE who wants to join, and members can bring a family member/friend for free to learn along with them :)

I'm actually in the process if being trained to help teach one of our "introduction to Fibromyalgia" Education classes, which is a held over three nights (6:30pm-8:45pm with a number of stretch breaks!!)


I'm hoping that others with Fibro will find this thread and we'll be able to help each other,support each other - asking and answering questions !!
 
Doug - great info. I know this is something I have been wondering about. With my one leg I have gone through all kinds of testing with MRI's, CT scans, EMG's, x-rays, bone density scans and I'm not sure what all else. Over a period of 5 years, they could tell me what I don't have, but could never determine what it was and just gave me a diagnosis of RDS (repetitive stress dystrophy) or neuropathy. Now the lower back and right leg are having issues. I also have carpal tunnel in both hands and wrists, massive migraines, IBS, not sleeping, and other issues. When I get better insurance (September) I will be going to a new doctor (all other tests were done in Missouri and I have moved to Florida) and seeing what more they can come up with. For the time being, I am in constant pain and am having problems walking. I had been using a cane, but am moving to a walker soon. For the previous diagnosis, they gave me Cymbalta, but it never helped and I had to be weaned off. I was on it for 4 years before they would agree to wean me off. My pain is adding to my not being able to sleep and some minor (nothing I can't handle) depression. (I am doing coping mechanisms that I got from a co-worker to deal with it)

Such fun. Glad to know what to look for and what I need to know.


Have you already been Dx'd with Fibro - or are you speculating that is what you might have ?

If you are still in the discovery stage I would recommend asking your doctor to send you to a rheumatologist who is familiar with Fibromyalgia and other Myofascial conditions (rheumatologist & pain specialists are often the most trained to diagnose Fibro and similar conditions). Of course before being Diagnosed they will almost certainly do and extensive amount of blood work including possibly genetic testing to rule out anything like muscular dystrophy and other muscular conditions - as well as EEG, Nerve Conduction tests, Evoked potential tests etc to rule out and other types of neurological conditions ... unfortunately it still takes many Fibro patients between 4-10years (average 6) to be formally diagnosed and to rule out anything else (one of the most common "rule out" conditions is MS).

Regarding medications - it's common to have to try a number of medications to find one(s) that will work for you - it;s important to give medications enough time to really get into your system to see if they will work (6weeks minimum) and keep in mind that sometimes "newer" meds aren't "better".

I have a list of a number of medications Fibro specialists have found helpful for many of their patients including some medication combinations that have been very helpful for some people. If you're interested PM me and I'll pass them on to you that way (I'd rather not post medications and dosages on the thread - however if anyone is interested privately let me know) - of course ALWAYS discuss ANY and ALL medication changes with your doctor & only take medications that have been prescribed to you by your doctor and dispensed to YOU by your pharmacist.
*** Under NO circumstances "try","borrow" etc a friends medication to see if it might work for you - this is dangerous and can be fatal (ie - you can die from it!) ***
 
Have you already been Dx'd with Fibro - or are you speculating that is what you might have ?

I have not actually been diagnosed with it, but several doctors were leaning in that direction a few years ago. I now live in a different state and will have to get all new doctors.

If you are still in the discovery stage I would recommend asking your doctor to send you to a rheumatologist who is familiar with Fibromyalgia and other Myofascial conditions (rheumatologist & pain specialists are often the most trained to diagnose Fibro and similar conditions). Of course before being Diagnosed they will almost certainly do and extensive amount of blood work including possibly genetic testing to rule out anything like muscular dystrophy and other muscular conditions - as well as EEG, Nerve Conduction tests, Evoked potential tests etc to rule out and other types of neurological conditions ... unfortunately it still takes many Fibro patients between 4-10years (average 6) to be formally diagnosed and to rule out anything else (one of the most common "rule out" conditions is MS).

I have had numerous tests and given blood by the 10 vials at a time at least 12 times to rule out all kinds of things. Over 10 years, they can tell me what I do not have and rule out most everything.

Regarding medications - it's common to have to try a number of medications to find one(s) that will work for you - it;s important to give medications enough time to really get into your system to see if they will work (6weeks minimum) and keep in mind that sometimes "newer" meds aren't "better".

I was on different meds at different times and took them for 1-2 years with no results or relief.

I have a list of a number of medications Fibro specialists have found helpful for many of their patients including some medication combinations that have been very helpful for some people. If you're interested PM me and I'll pass them on to you that way (I'd rather not post medications and dosages on the thread - however if anyone is interested privately let me know) - of course ALWAYS discuss ANY and ALL medication changes with your doctor & only take medications that have been prescribed to you by your doctor and dispensed to YOU by your pharmacist.
*** Under NO circumstances "try","borrow" etc a friends medication to see if it might work for you - this is dangerous and can be fatal (ie - you can die from it!) ***

And I do know that no one should EVER take another person's medicine for any reason what-so-ever.

Part of why the doctors were leery of trying out others meds with me is due to my allergies to a lot of meds. I will be seeing some doctors sometime after September (new insurance) and go from there. In the meantime, I am just dealing with my daily pain and walking with either 2 canes or a walker. It takes 2 people to help me up from sitting while at church. At home it's not so bad since I am more mobile, but still with the canes or walker.
 
And I do know that no one should EVER take another person's medicine for any reason what-so-ever.

Part of why the doctors were leery of trying out others meds with me is due to my allergies to a lot of meds. I will be seeing some doctors sometime after September (new insurance) and go from there. In the meantime, I am just dealing with my daily pain and walking with either 2 canes or a walker. It takes 2 people to help me up from sitting while at church. At home it's not so bad since I am more mobile, but still with the canes or walker.

Hope that diagnosis comes in soon for you. Sorry you are currently dealing with so much pain. Almost makes me feel guilty for having a good day!:giggle:
 
Hope that diagnosis comes in soon for you. Sorry you are currently dealing with so much pain. Almost makes me feel guilty for having a good day!:giggle:

Thanks!! I look at it this way - there are plenty of people who have worse problems than me, I am able to get through the day with minimal issues, and I still have a sense of humor. I also make sure I am at church weekly, even though it hurts too much. I have to rise above the pain and my other issues.

You are truly a blessing in my life just by being there.
 
I just thought I'd mention that I've recently been accepted into a Fibromyalgia Research trial - the goal is to help educate medical professionals about the various manifestations of fibro as well as help create a new ABBT (Acceptance Based Behavioural Therapy) for Fibro patients :)

So far the research group seems to be very interested in what we- the people living with Fibro- have to say, which is fantastic !!
 
Thanks!! I look at it this way - there are plenty of people who have worse problems than me, I am able to get through the day with minimal issues, and I still have a sense of humor. I also make sure I am at church weekly, even though it hurts too much. I have to rise above the pain and my other issues.

You are truly a blessing in my life just by being there.

Awww...thanks! I feel the same way. I have drawn from your strength more than once!
 
Just wondering how any of our Fibro members are doing lately ??
 
Still in pain, but mostly it's not as bad. I will be seeing a new round of doctors after Sept 1st (new insurance).

Having more problems walking and had to use my mother's walker this morning for church.
 
I don't have any new or experimental trial therapies to share yet. I will get more data in next 3 months- yeah these takes times. I only thought it privvy to share some of what I do for staff education at hospital, and if members desire, I can share my rhetorical essays which I tell staff in meetins. I have some difficulties explaining some things in lame man's terms but I will try and be conscious of it in future.
 
Just checking in. The diagnosis did come in, I do have fibromyalgia. Doctor is checking his options regarding medicine for me, since I have already been on so many and they didn't work at all. He is also concerned about my allergies to so many medicines.

I am having more and more days where I am unable to walk or move without pain. I live with a heating pad nearby.
 
Question I need to ask. My doctor is still researching and getting more info for me.

I have been having what seems to be a muscular issue in my right leg. This is the leg that I have the neuropathy in. The numbness is down the right outer side of the leg and actually goes from ankle to shoulder and includes the right arm now, but is still mainly on the outer side as opposed to top or bottom. Well now, I have a MAJOR achiness (is this even a word?) in the muscles on the back side. IT was just originally in the thigh, just above the knee. Well tonight, it is now from just above the Achilles Tendon and goes up to the behind (butt muscle). It's only in the back and still only the right leg. Any weight or pressure causes major pain to the point of tears and I have a very high thresh hold for pain. Doctor's only thought is that my body is just beginning to say "Enough!" since I seem to push it too far and that I may actually have to move to a scooter or wheelchair.

Does this sound like it's part of the fibro or possibly yet another issue? The doctors are baffled. All testing that was recently done since this started came back "inconclusive". All nerves and muscles are working properly. No reason they can see for the pain. My knees are now "popping" daily and give out more and more often. Driving hurts real bad and I am supposed to be the driver for mother and MIL and my kids cannot drive yet.
 
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