Fibromyalgia thread

[Upgradable]

I was diagnosed with fibromyalgia in 1994 with times of successful and unsuccessful management.

I''m currently in a flare and in the midst of looking for a good forum with experiences and ideas (not just a place to whine), and I thought, why not start in the best forum ever??

So...... if you have it and know of a good forum, please let me know. Or, if you want to just start a thread here that we can all continue to use as a place to share knowledge and support, chime in!

 

[Kaleigh]

My Mom has it. I don''t know of any great sources to send you to. But wanted to say I am sorry... I hope others give you some good info. Sending you a hug.

 

[disneybride]

Just a thought from out in left field. My fiance was diagnosed with what he was told was fibromyalgia two years ago. He had 13/18 positive trigger points, so much leg pain and crampiness he would lay halfway down the bed and sleep kicking his legs all night long. He was always exhausted, dark black circles under his eyes, and feeling depressed. He went for a sleep study and found out he has sleep apnea. He has a CPAP machine and in three months it has made a tremendous difference, to the point they have rescinded the fibromyalgia diagnosis. He sleeps well and he is no longer achy for the most part. If all else fails I would suggest getting a sleep study done. If you''re not getting into a deep sleep your brain isn''t resting and it causes severe physical manifestations over time.

 

[joflier]

My aunt was diagnosed with fibromyaliga several years ago, but it wasn''t a complete diagnosis. She didn''t have all the right trigger points, only some. Now she has just been diagnosed as having small fiber neuropathy. There are some similarities, but I guess there are different treatments. So sorry that you have to experiance such pain and discomfort. I''ve dealt with mild arthritic pain, at a very young age, so I know what pain is like. No fun. Sending you good thoughts!

 

[MichelleCarmen]

I don''t have FM, but have read up on many natural healing sites for other reasons and have read that many people with that find that without eating ANY gluten at all, all their symptoms will disappear in two weeks (or slightly longer - possibly give it a month). Gluten is in many hidden foods, such as sauce mixes and even on the powdery substance that is coated on gum. Possibly google some Celiac sites and see what what foods to stay away from and test out and see if eating gluten free helps. It cannt hurt any to try.

Keep in mind that IF it''s gluten related, when you initial start the diet, you may end up having worse symptoms as your body detoxes.

Best of luck and be sure to report back if you have positive results.

 

[Upgradable]

Thank you ladies, for your well wishes and advice. Sleep study has been done and I''m on Lunesta to help with that. Investigated the celiac route and flares continue. This is a true diagnosis of fibromyalgia, and I realize at this point I know more about it than many physicians. I''ve finally found a good doctor, but it helps to have others with similar experiences. By no means am I looking for coddling, but it is also important that this be acknowledged as real and not a garbage can diagnosis or just something that is all in the mind. I know noone was intending that, but it is a hot spot for fibro sufferers.

 

[packrat]

Have you ever tried an infrared sauna? My mom has fibromyalgia. She''s tried a lot of different things. I''ve been trying to get her to use my bff''s infrared sauna, but sometimes I think since she''s had it for so long (30+ years) she''s tired of trying different things. She did do pain patches and trigger point injections which helped a little, but it was expensive.

 

[MichelleCarmen]

You were tested for Celiac or just tried the non-gluten diet? If it was the former, you may want to try the non-gluten diet. When I posted, I was trying to say it was gluten, not celiac that could be making your FM symptoms worse. (Maybe I just misunderstood your response. . .that you already did try changing your diet.)

 

[Upgradable]

MC, I tried the diet change. I did find I had more energy, but the body pains and migraines were still a problem. Sleep was also a big issue! Fibro sufferers are big on trying every suggestion and all strategies that seemed to have helped someone else, but symptoms always seem to creep back in. The only thing I think I haven''t tried is magnet therapy and some of the more out there nutritional suppliments.

 

[risingsun]

I was recently diagnosed with fibromyalgia. I'm on a three month medical leave from work. Besides the body aches, I have migraines, TMJ, IBS, chest wall pain, extreme fatigue, UR type sx--which come and go--and other assorted sx. I don't know, at this point, if I will be able to return to work. Over the past few years, I went from a 4 day work week to 3 days, to 2 days and then started having absences at 2 days. I just started Lyrica, so we will see if that helps. If you find a good support site, let me know! I will be happy to chat with you anytime

 

[Upgradable]

RisingSun, I''m glad you finally got a diagnosis! As overwhelming as this can be at times it is worse when no one can confirm that there is something actually causing all of the symptoms!

I haven''t found a good support forum yet. They all seem to be incredibly "woe is me!!!" and "I''m on more drugs than you" which makes me feel even worse!

My biggest struggle was finding a doctor who didn''t feel like I needed a new pill or higher dosage for every little thing! I had more problems dealing with the side effects of medication than I probably did with symptoms. It was hard to know what was fibromyalgia and what we were causing!

I liken my goal to walking on a tight rope: figure out how to get the most benefit from the least treatment! I''m only on two meds, Cymbalta (which really takes care of about 90% of the pain) and Lunesta. Sleep seems to be the number one key to keeping me in good health, so the Lunesta is a godsend. It allows me to get a good night''s rest without giving me a "hangover" like morning.

However, I am quite vulnerable to contracting any virus that goes around and when I get "out of balance" it takes me about a week to get back to feeling good. My gynecology visit triggered a flare that lasted about a week.

I hope that you''re able to get back to work. It took me three years (the last with the help of a therapist) to realize that working was counterproductive to my health.

I''d be happy to talk more with you. Let''s use this thread for the mean time. Good luck and God bless!

 

[Upgradable]

Great article!! This is from the Januray 2009 issue of The Fibromyalgia Network Newsletter:

"One would think that fibromyalgia''s high prevalence and burdensome impact on patients , their families, and society would command the attention of doctors and researchers everywhere. Yet, speaking at the National Fibromyalgia Research Association conference in October, Manuel Martinez-Lavin, M.D., of Mexico City, points to the ''fibro paradox'' in which many physicians have an attitude of rejection and evasion. They don''t want to see patients with FM. Furthermore, he pointed to a recent survey of doctors in Norway asking them to rank the prestige of more than 100 diseases. FM ranked last.

Why is there a disconnect between the problems FM patients face and the lack of interest by physicians? The multiple symptoms that make office visits time-consuming and no underlying blood test or biopsy to prove the diagnosis are partly to blame. ''Worst of all,'' says Martinez-Lavin, ''a direct blow to the physician''s inflated ego is the fact that many FM patients do not get better with prescribed medications. And perhaps the most essential disconnect between patients and physicians is the linear thinking used by the medical community that cannot explain complex diseases like FM.''

In medicine, Martinez-Lavin says this approach can be seen by many medical specialists such as cardiologists, gynecologists, opthalmologists, and others who have a narrow view of their patient''s medical problems. Certainly, this linear viewpoint fails to understand or acknowledge complex diseases, such as FM.

When studying complex diseases, such as FM, scientists need to shift their approach away from traditional linear thinking. ''We have to see the humban being as a whole,'' says Martinez-Lavin. ''We must end the mind-body split and see how this human being is related to the environment.'' Complex systems are continually sampling their environment and have the ability to adapt to changes. He added that one of the most adaptable complex systems in the human body is the autonomic nervous system (ANS) and its faulty performance generates the symptoms of FM.

The ANS is in charge of controlling organ systems, regulating important body functions, and adapting to the environement. It maintains vital signs like blood pressure and respiration by using harmonious signals from its two opposing branches: the symptathetic and the parasympathetic. The sympathetic nerves communicate through the release of norepinephrine and the parasympathetic nerves release acetylcholine. The ANS has a close relationship with higher brain function as well as the immune and hormonal systems, while it works below the level of consciousness.

''The ANS is the interface between mind and body. Autonomic activation transforms emotions like fear or anger into biological functions like paleness, pupil dilation, and rapid heart rate, among many other reactions.'' Its intricate nework constitutes the body''s main stress response mechanism and its ability to be molded or altered by the environment enables it to adapt and survive.

Conventional medical thinking suggests that diseases arise from the disruption of the orderly machine-like systems of the body. Yet, disorder is what gives a complex system its ability to maintain life, says Martinez-Lavin. Systems that lose their elasticity or resilience are unable to respond to the changing environment and are more likely to become ill or readily die. Disorder is healthy and uniformity leads to disease in a complex systme.

Martinez-Lavin points to seven published studies showing sympathetic hyperactivity in FM patients compared to age-matched controls. ''This is one of the most consistent alerations found so far in FM. Patients have an unbending heart rate variability and their sympathetic nervous system is already committed and is unable to respond to stimuli.''

''The ANS in most FM patients is characterized by a sympathetic nervous systme that is persistently hyperactive,'' says Martinez-Lavin, making it hard to sleep. When the system is maxed out, and the norepinephrine receptors are tired of being bombarded, the sympathetic nervous system is hypo-reactive. ''When the tiger comes charging , the ANS of people with FM is unable to respond,'' says Martinez-Lavin referring to the fight-or -flight stress response mechanisms of the sympathetic system.

The ANS in healthy people operates differently during sleep and wake periods. During the day, the sympathetic branch is dominant. At night, the parasympathetic component is dominant, although less so during rapid eye movement (REM) sleep. In contrast, Martinez-Lavin found that in FM patients, the parasympathetic system, which is essential for the functions of rest and digest, does not take over during sleep in FM patients. Given the sympathetic dominance during the night, it should be no surprise that patients have difficulty falling asleep and staying asleep and staying asleeep.

Hyperactive sympathetic systems can explain FM''s most troublesome symptoms: chronic widespread pain and numbness-tingling sensations in the extremities. Excessive norepinephrine can stimulate the pain-transmitting nerve nodules that lie along the spine."

 

[risingsun]

Thanks for posting the article. Very interesting and explains why it's difficult to be diagnosed in a timely manner. I am unable to try Cymbalta because my my migraine meds have triptan in them. In combination, it could lead to Serotonin Syndrome, which can be a life-threatening condition. In addition to the fibro, I have esophogeal and biliary spasms, which are recurrent and unpredictable--not to mention, quite painful. I also have GERD and a hiatal hernia. I'm taking meds for these conditions, but I'm still experincing distress and pain. Maybe, not so often. My doctors want to put me on a calcium channel blocker, but not until I've been on the Lyrica for two months. I can't say I've had a pain free day in a long time. Probably several years. I have not so bad days, not so good days, and really bad days

I'm going to bed now. I'll speak with you soon

Where did you get your newsletter. I should probably sign up to get some more info on fabulous fibro

 

[Upgradable]

I''m so sorry about the GI symptoms! I have intermittent heartburn at night and some really entertaining IBS, but all seem manageable with OTC treatments. I talked to my doctor about Lyrica, but she said she hadn''t seen enough benefits to enough patients to add another med to the mix. That''s fine by me, since my previous doctor''s philosophy was to keep throwing pills at me. When I''m in balance, ibuprophen or Excedrin Migrain seem to be enough. Although I must have slept weird last night because I''m having a bad time with TMJ this morning. Off to the medicine cabinet!

http://www.fmnetnews.com/ Here is where the article came from. I haven''t yet joined but the article was really good. I have a medical background and the explanation of the mechanism of overload to the sympathetic nervous system sounds spot on. They still have not definitively ID''d the root cause of fibro, so there is a lot of discussions. This explanation is analagous to people developing type II diabetes by becoming resistant to insulin. Sorry..... off on a medical rant!

I''d be interested to hear about your migraines. Mine seem to be at bay right now. Not chronic at all, but about one per month. Also interested to hear how you think the Lyrica works. God bless, and I hope you have a good sleep!!

 

[risingsun]

I have had migraines for many years. I have several per week. That''s why it''s necessary for me to have migraine meds. I''ve only been on Lyrica for two weeks. My dose is increased next week and we''ll see if there is any difference. Today, the pain has been pretty bad. I shouldn''t have ventured into the ATW forum, it didn''t improve things

Can you tell me something about your medical background? I''m a Licensed Professional Counselor. I have worked in a hospital based behavioral medicine practice for the past ten years. I think I may have mentioned that I am on medical leave. I''m trying to take things a day at a time. Easier said than done.

Take care.

 

[snlee]

Date: 1/24/2009 9:03:53 PM
Author: Kaleigh
My Mom has it. I don''t know of any great sources to send you to. But wanted to say I am sorry... I hope others give you some good info. Sending you a hug.

Ditto. Hugs.

 

[Upgradable]

RS, I have a degree as a medical technologist (medical lab work) as well as certification as a medical assistant. My masters degree is in adult education. Since 1991 I have been teaching medical programs at technical and vocational colleges. That is until 2005 when I gave it up to get better.

 

[risingsun]

Date: 2/1/2009 11:09:25 AM
Author: Upgradable
RS, I have a degree as a medical technologist (medical lab work) as well as certification as a medical assistant. My masters degree is in adult education. Since 1991 I have been teaching medical programs at technical and vocational colleges. That is until 2005 when I gave it up to get better.

Thanks for sharing your background with me. This condition can really take the zip right out of you, can't it

I ended up in the hospital with chest pains, several months ago. I was admitted for a completed cardiac workup. My heart is fine. Six weeks later, back in the hospital again, with chest pains. My MD said it was chest wall pain associated with fibro! The last incident came on suddenly, as I was about to see my last patient of the day. I was in the chart room with my supervisor and some colleagues. They saw what was happening to me and insisted I go directly to the ED. They called my husband to make sure I was compliant, or one of them was going to take me there. I was out of work that week. When it came time for me to return to work the next week, I realized I just couldn't do it. I went to my doctor and he placed me on medical leave. I knew it was time. So now I'm at home, wondering what comes next.

 

[DiamanteBlu]

Do a search on fibromyalgia and glutathione. Increasing your body''s glutathione levels seem to help [for may other diseases too]. I am not sure what else I can post here without breaking the rules [because I am one of their top reps and get paid on any product I move] but there is a product out there that has been shown to increase glutathione levels by 292% [mean in healthy people - can''t remember the standard deviation - in people with illness the increase is higher]. I wish I could tell you more.
Best -

 

[Upgradable]

Thanks Blu.... will do a search. I''m also going to give another try to the gluten and sugar free diet. Anything that gets me moving in a positive direction has to be good!

RisingSun, are you an aussie? I ask because of our post time differences. I''ve been to the ER twice with what I thought were heart attack symptoms (and remember, I''m trained in the medical field). First time they thought maybe it was gall bladder, even though ultrasound never showed any stones. Second time was about two years later. They rush me in past all these bleeding and puking people who have been waiting hours, and guess what they diagnosed........... gas!

Yup, I had gas.

 

[risingsun]

Date: 2/1/2009 8:45:18 PM
Author: Upgradable
Thanks Blu.... will do a search. I'm also going to give another try to the gluten and sugar free diet. Anything that gets me moving in a positive direction has to be good!

RisingSun, are you an aussie? I ask because of our post time differences. I've been to the ER twice with what I thought were heart attack symptoms (and remember, I'm trained in the medical field). First time they thought maybe it was gall bladder, even though ultrasound never showed any stones. Second time was about two years later. They rush me in past all these bleeding and puking people who have been waiting hours, and guess what they diagnosed........... gas!

Yup, I had gas.

Gas

Oh dear! I was going to ask you if you were an Aussie

I live in Virginia in the USA. Where are you from? That's so funny. I also noticed the differences in our posting times. I, too, also rushed in past the bleeding and puking people. I must say that my BP went through the roof and has been very erratic. I wonder if it's from the pain. I will also do a search on fibromyalgia and glutathione. Let's compare notes.

 

[risingsun]

Date: 2/1/2009 8:26:54 PM
Author: DiamanteBlu
Do a search on fibromyalgia and glutathione. Increasing your body''s glutathione levels seem to help [for may other diseases too]. I am not sure what else I can post here without breaking the rules [because I am one of their top reps and get paid on any product I move] but there is a product out there that has been shown to increase glutathione levels by 292% [mean in healthy people - can''t remember the standard deviation - in people with illness the increase is higher]. I wish I could tell you more.
Best -

Blu~I wonder if you could post a link to the product. It would be for informational purposes and we wouldn''t be purchasing a product directly from you.

 

[Upgradable]

RisingSun.... I'm in Oklahoma, and usually on the computer from the time I get the kids off to school until about 9 or 9:30 at night. And I found some glutathione at the health food store. Just a capsule. I bought it but am going to do a little more research before trying it. Don't want to set anything off accidentally.

So far what I'm reading says that oral suppliments don't affect blood levels. There is good data that increase blood levels of glutathione is helpful, it's just questionable about how to get there without an IV or injection.

 

[Efe]

Date: 2/1/2009 10:56:43 PM
Author: risingsun

Date: 2/1/2009 8:45:18 PM
Author: Upgradable
Thanks Blu.... will do a search. I''m also going to give another try to the gluten and sugar free diet. Anything that gets me moving in a positive direction has to be good!

RisingSun, are you an aussie? I ask because of our post time differences. I''ve been to the ER twice with what I thought were heart attack symptoms (and remember, I''m trained in the medical field). First time they thought maybe it was gall bladder, even though ultrasound never showed any stones. Second time was about two years later. They rush me in past all these bleeding and puking people who have been waiting hours, and guess what they diagnosed........... gas!

Yup, I had gas.

Gas

Oh dear! I was going to ask you if you were an Aussie

I live in Virginia in the USA. Where are you from? That''s so funny. I also noticed the differences in our posting times. I, too, also rushed in past the bleeding and puking people. I must say that my BP went through the roof and has been very erratic. I wonder if it''s from the pain. I will also do a search on fibromyalgia and glutathione. Let''s compare notes.

If you live in Northern Va, there is a fabulous alternative doctor in Aldie, near Middleburg, who is a rhumatologist (sp) and one of his specialties is fibromyalgia. His name is Dr. Norman Levin. He uses supplements and iv vitamin therapy, along with traditional medicine. He spends about 1 1/2 hours with you during the initial appointment and at least 1/2 hour for follow up appointments.

 

[Upgradable]

Bizou.... YOU ROCK!!!!! RisingSun, check this out because a good doctor is #1 in getting this puppy under to control!!

 

[risingsun]

Date: 2/2/2009 2:21:08 PM
Author: BizouMom

Date: 2/1/2009 10:56:43 PM
Author: risingsun

Date: 2/1/2009 8:45:18 PM
Author: Upgradable
Thanks Blu.... will do a search. I''m also going to give another try to the gluten and sugar free diet. Anything that gets me moving in a positive direction has to be good!

RisingSun, are you an aussie? I ask because of our post time differences. I''ve been to the ER twice with what I thought were heart attack symptoms (and remember, I''m trained in the medical field). First time they thought maybe it was gall bladder, even though ultrasound never showed any stones. Second time was about two years later. They rush me in past all these bleeding and puking people who have been waiting hours, and guess what they diagnosed........... gas!

Yup, I had gas.

Gas

Oh dear! I was going to ask you if you were an Aussie

I live in Virginia in the USA. Where are you from? That''s so funny. I also noticed the differences in our posting times. I, too, also rushed in past the bleeding and puking people. I must say that my BP went through the roof and has been very erratic. I wonder if it''s from the pain. I will also do a search on fibromyalgia and glutathione. Let''s compare notes.

If you live in Northern Va, there is a fabulous alternative doctor in Aldie, near Middleburg, who is a rhumatologist (sp) and one of his specialties is fibromyalgia. His name is Dr. Norman Levin. He uses supplements and iv vitamin therapy, along with traditional medicine. He spends about 1 1/2 hours with you during the initial appointment and at least 1/2 hour for follow up appointments.

Thanks, Bizou

I live in the western part of the state, near West Virginia. Still, it might be worth a call and see if I can have a consult with him. Thanks for thinking of us

 

[risingsun]

Date: 2/2/2009 2:45:47 PM
Author: Upgradable
Bizou.... YOU ROCK!!!!! RisingSun, check this out because a good doctor is #1 in getting this puppy under to control!!

Speaking of puppies, my dog's breeder lives near Middleburg. Might to a good time to visit her and see the doctor, too

So, you're in Oklahoma. We both thought the other was an Aussie...that's pretty funny

What OTC supplement did you find? Maybe Blu will come back with a linky.

 

[Upgradable]

I think I may have a good support forum: http://www.mdjunction.com/forums/fibromyalgia-discussions

I''ve been hanging out the past couple days and have been getting some good info. Beware, there are some VERY depressing threads though. I''m registered as mellydramatic.

 

[risingsun]

Thanks for the link. I''ll check it out, mellydramatic

 

[DiamanteBlu]

Don''t bother with glutathione supplements. You will just be throwing money out the window - better to save it for sparklies! The tripeptide breaks down in the digestive system and becomes useless. IV glutathione is not particularly helpful either because the molecule is too large to pass through the cell walls so it can''t get to where it is needed. The only way to effectively increase your intracellular glutathione [the main endogenous antioxidant - the other two are super oxide dismutase and catalase] is to take something that makes your cells manufacture more of it. This is not an easy task.

The company website of the product I was talking about [MaxGXL] can be found here. You will want to click on the MaxVideo link and look at Dr. Keller''s interview. I think that you will find the info informative. There is a bunch of other written stuff on the site too. Also, you can see the slides presented at the International Society of Anti-Aging medicine conference on the DBPCS results here. You can order the product directly from the company.

Hope this helps.