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Adrienne Dellwo

Dysautonomia in Fibromyalgia & Chronic Fatigue Syndrome

By August 24, 2012

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Blog Classic: Aug. 16, 2010

Not everyone with fibromyalgia and chronic fatigue syndrome has problems with homeostasis, but most of us definitely do. That's because of abnormalities in our autonomic nervous system. A whole "family" of illnesses have this same problem, and they fall under the umbrella term "dysautonomia."

The autonomic nervous system is supposed to keep things running smoothly and in balance. It controls your heart rate, breathing, digestion, reactions to stress, temperature, balance, and sleep. By now you're probably thinking, "Yep, I've got problems with some (or all) of those things." I know I do.

The symptoms of autonomic dysfunction will likely look familiar to you as well (my thanks to Dr. Rich Fogoros, About.com Guide to Heart Disease, for this list):

  • Aches and pains
  • Anxiety attacks
  • Blurred vision
  • Depression
  • Digestive problems
  • Dizziness, sometimes with fainting
  • Fatigue
  • Low blood pressure (especially upon standing)
  • Numbness and tingling
  • Poor exercise tolerance
  • Rapid heart rate
  • Sweating

I've personally dealt with 11 of those 12 symptoms, and I hear stories about other people with them every day.

You can learn more about dysautonomia from Dr. Rich's site:

In those articles, he does state, "Most victims of dysautonomia eventually find that their symptoms either go away or abate to the point that they are able to lead nearly normal lives." While that may apply to many conditions under this umbrella, it's not typical of fibromyalgia and chronic fatigue syndrome. Please remember that he's talking about a wide range of illness and don't take offense at this statement!

There's no magical cure for dysautonomia, but understanding it can help you get a handle on what's going on in your body. It may also be a more helpful label for you to use, since our illnesses are so often misunderstood, maligned, and belittled.

Which dysautonomia symptoms do you have? How do you deal with them? Take the poll, and leave your comments below!

Learn more or join the conversation!

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Comments
August 16, 2010 at 6:23 pm
(1) Ann Fudge says:

I have all of the dysautonomia issues except for the dizziness and fainting. The more I read about fibro and cfs, the more scared I get. This on top of chronic intractable pain, diabetes, peripheral neuropathy, DDD, scolosis and more, it gets to be more than I can handle.

August 20, 2010 at 5:45 pm
(2) Judy P says:

The symptom that led to the series of specialists I saw leading up to my diagnosis of FMS was the dizziness. I could barely walk a straight line. I also had a vasovagal response to a abdominal cramp while I was driving: had my first ambualnce ride for that one. My bp shot so high 201/186 (I went in for the dizziness and sudden tingling in my hand) that the ER ordered a CT to see if I was stroking. Most of these are controlled now, but sometimes I get so dizzy that I’m nauseated. And yes, I’ve been tested for many common causes of dizziness. It’s scary stuff.

August 20, 2010 at 5:49 pm
(3) Lois says:

I agree with Ann…everytime someone hangs a new label and adds more symptoms to fibromyalgia, I become more overwhelmed and hopeless.

I think it also makes more of the health care community skeptical that we have a physical problem rather than being just plain nuts.

August 20, 2010 at 9:53 pm
(4) Heather says:

I was dx-ed with FM in 2008 and I am now 35 years old. I was unsatisfied with the treatment given me (only amitriptyline and flexeril). I have a VERY LOW tolerance to drugs, especially if they make you drowsy. I am now pregnant and can only take the flexeril (with feeling comfortable for the baby’s sake – not mine). I recently went to a new rheumatologist and he said he definitely knew 2 things (1) that I was hypermobile and (2) that I had carpal tunnel. He also stated he wanted to look at more things before dx-ing me with fibromyalgia. I just want tolerable treatment options. I have the dysautonomia in almost all of those. The rheumy said he won’t be able to do much until after I deliver.

Is it common to have that happen with doctors? One will dx you with FM and another won’t because they think that FM is a “garbage pail diagnosis.” Thanks for reading thus far.

Blessings,
Heather

August 21, 2010 at 9:47 am
(5) weeroo says:

Heather, don’t take no for an answer, you are in pain, go to a pain management clinic, make sure it is reputable and not a pill factory or surgery happy. There are treatmenhts for pain, it doesn’t matter how you got the pain! If it is chronic there is no reason you have to ‘live with it’ keep going until you get treatmeant you are comfortable with. They should be able to take away the worst of it. Doctors are afraid some meds are addicting, but for chronic pain that is not always the reaction. It is your body, not the doctors.

August 21, 2010 at 11:35 am
(6) Soverytired says:

It is very overwhelming and sometimes scary to learn more about CFS/FM. But it’s also comforting to know that I’m not alone. And that my neverending symptoms always lead back to the same crummy disease I’ve been dealing with for years. July and August have left me in a pool of sweat and a fast heart rate. I take Cymbalta for the anxiety and it works pretty well. I avoid wheat to help with the digestive issues. But some days I don’t want to get out of bed. The pain can be debilitating and depressing, but for my family’s sake I have to keep going.
As for doctors, they may try to understand what we are going through. But they can’t. CFS/FM can only be truly understood by those that have to live with it on a day to day basis.

August 22, 2010 at 10:10 pm
(7) Marsha says:

I started having intermittent lightheadedness, shaking chills and nausea three years ago, also had increasing general weakness and lethargy, rapidly lost 10 lbs and counting. By January of 2010 I was nearly bedridden. PCP was no help, kept sending me to gastro, all tests were negative. I finally referred myself to Cleveland Clinic where I was diagnosed with dysautonomia and fibro by a wonderful rheumatologist who knew what to do. I drink two liters of salt water every day religiously, plus take doxepin for the fibro. I am very gradually feeling better but still not back to normal. This thing took me down like a cougar on a gazelle. I hope PCPs would see these posts and realize that patients can suffer terribly because of their ignorance. If I had been properly referred, I would have three years of my life back. Not to mention having avoided nausea and lightheadedness 24/7/365. I am very grateful for my new doctors, THEY are truly wonderful. Thank you for featuring dysautonomia!

September 1, 2010 at 3:00 am
(8) Pam says:

What can you tell me about drinking salt water? At one point during the five year illness I was DX’d with hyponatremia but it reversed itself. What do they say this helps with?

October 12, 2010 at 2:17 pm
(9) Butch says:

In 2006, I suffered from…bloatedness,constipation,severe headaches,severe aches and pains,chest pains,heart palpitations,severe nausea…I think it was brought on by by boughts of binge drinking and using poppers,ana inhalant…i stopped drinking and sniffing poppers for a year and all of my symptoms went away but unfortunately, I got caught back up into that scene again and ain Nov 2009, things got worse…with all of the above symptoms some more were added on, a afeeling as though I was going to pass out all the time-24/7(that lasted for about 4 to 5 months,also feelings as though my heart was going to give way, now I have extreme fatigue and sweats and the fatigue is so bad, I can feel the strain on my heart…I had stopped drinking and the drug poppers, but had 3 relapses which seem to have made the fatigue worse…This has severely affected my life, almost crippling..I’m still trying to work but its very trying and extremelyy difficult….I know I need to stay away from the toxins and chemicals I had been doing, or they will eventuallyy kill me…I though I could maybe still drink once in awhile but I cant….I hope and pray that my body comes back around….What can help with the fatigue?

August 17, 2011 at 10:32 pm
(10) Randy says:

I have a number of friends right where you are now. If you can find a way to cut back or stop poppers and drinking you may see improvement but poppers in particular have an extremely caustic effect on the nervous system. My decline started with what I call my crystal summer. I dated a guy into all kinds of party favors. They were a new experience for me and even though it only lasted 8 months, the impact on my body was profound. I’m now disabled and dreaming of returning to work. I loved my job so being kept from it is agonizing. I spend my days bored out of my mind, itching hives and struggling to get from bed to my chair. The drugs weakened my body allowing cancer to get a stronger foothold and weakened me so badly that I was almost to I’ll to survive chemotherapy. I’m convinced it wouldnt have been nearly the nightmare it was had I taken care of myself. We seem to spend the first half of our lives destroying our bodies and the last half trying to get it back.

November 1, 2010 at 3:24 pm
(11) Angie says:

I was diagnosed with Dysautonomia in May 2010, after a tilt table test was performed. I suffer with P.O.T.S as a result of my Dysautonomia. My most aggrivating symptoms are a rapid heart beat, fatigue, headaches, IBS symptoms, and migrains. My problems started after having H-Pylori in 2002. I had suffered for nearly 8 years with some or all of the above listed symptoms before being diagnosed. I am so thankful for my cardiologist; he has been a God send. I drink at least 64 oz. of fluid per day, excerise at least 30 mins. a day (even when sick), and add salt to my food. I feel like my overall health is improving, but the fatigue is a constant reminder that I am not in control. I hope and pray the research will continue. I hope and pray the medical community will continue to educate themselves and the general public about this terrible disorder. I just wish people could understand the gravity of how Dysautonomia disturbs my daily life and the lives of my husband and teenage son.

May 20, 2011 at 9:10 am
(12) Michael says:

I seem to be suffering from all of the symptoms except faintness and dizziness. I had convulsions as a child and on top of that my mom and dad carry autoimmune disorders including diabetes (dad and brother have it), arthritus and ezcema and I myself have arthritis and ezcema as well as allergies. I think the autoimmune conditions combined with the convulsions and upset my nervous system. I had huge ear, nose and throat problems as a child. I have constant butterflies in my stomach and constant nerves on edge even at rest. The worst parts of overheating, acid reflux, aches and pains and anxiety attacks. Sometimes I want to vomit in hot places like restaurants because of blood pooling in the stomach and I have some problems with balance, co-ordination, speech and walking gait, which was worse as a child. None of the symptoms seem life threatening or degenerative and I have been to university and achieved things I wanted to. Chronic tiredness after excerise and walking/standing for long periods is difficult and I cannot stand/sit for long periods although I am not faint when standing up but my heart does beat faster. Great site and articles. Cheers

November 23, 2011 at 3:17 pm
(13) yonko54 says:

Sweating is very common. You might consider oxybutin 5mg, 1-2 pills once to 3 times a day. It used for urinary urgency & tends to dry the mouth out. There are variations, ditropan and detrol la which tend to be less drying. oxytrol patches applies twice a week are probably the least mouth drying.
Remember, most of the ssri drugs ie paxil prozac venlafaxine etc make you sweat.
Make sure you aren’t menopausal on top of it all

December 27, 2011 at 1:07 am
(14) Pat says:

I’m so glad there is a name for this. I’ve been this way since I was young girl I’m 36 yrs old now and been dealing with Fibromyalgia for the last 2 yrs. To make things worse my neighbors dogs bark all day while they are gone. I try to tune them out but some times I get migraines and I want it to be quit. I’m also a single mom with a 3 yr old and when my daughters crying ,dog is barking, I’m in pain, I feel I’m in great distress. If they bark I will wake up and not go back to sleep plus my heart will race that’s how bad it is. Over dogs I can’t believe it. I need to record them for a week barking and sign a petition that I already did in order to have something done by my city. Oh ya they lost the first petition. Let me gather what ever little energy I have left to do this .

January 9, 2012 at 5:52 pm
(15) Brad H. says:

@ Heather.. I’ve been to numerous doctors and a majority of them have something different they want to diagnose me with. I have been diagnosed with depression, pericarditis (the most ridiculous one of all), some say nothing is wrong and I’m making it up like a hypocondriac. I have seen a dysautonomia specialist and that is my latest diagnosis. I do agree with this diagnosis as I have most of these symptoms. I also seem to have symptoms of CFS which is tied to dysautonomia.

So yes, different doctors will tell you different things. Personally, I’m convinced that medical aid is nothing more than big business trying to turn their profits rather than help us patients.

I have been dealing with this since August 1, 2011 and am so tired of this crap. I can only imagine how some of you feel; going through this much longer than I have. I feel totally useless and dependant. Something I’m not accustomed to. My life has been turned upside down because of this and it doesn’t look to get better anytime soon. All we can do is push forward and keep on keeping on. My prayers will be with all of you who commented here as well as the others who have dysautonomia, FM or CFS.

March 15, 2012 at 8:57 am
(16) Libby says:

I would really like to know what to do about the excessive sweating. I’ve been taking antidepressants for years but this is more recent so I don’t think they are the culprit. Any suggestions? My PCP suggested a dermatologist but I don’t know how they could help.

May 28, 2012 at 7:39 pm
(17) Kimberly says:

I have fibromyalgia, CFS, and POTS – Postural Orthostatic Tachycardia Hypertrophy Syndrome. Basically, POTS is a dysautomic disorder from a genetic problem in the brain based on the ephenephrine and neuroephinephrine and adrenaline, and I pass out frequently without warning, usually every 7-16 days. I take tons of medications for all my issues, including a weekly IV through a portocath in my chest for hydration, and give myself a shot of Procrit once a week to increase my red blood cells. Theorectically, the increase in fluid should help my heart and my brain work together to stop the dramatic drop in blood pressure when i change positions, from lying down to sitting, sitting to standing, just sitting, or just standing for long periods of time. I use a wheelchair now as the pass outs have broken L5-S1 and C3-4-5-6, and various other bones in my body. Life is good, and I am very blessed, but so tired all the time and tired of no control over my body. Does anyone have the same (or similar) issue and has any suggestions? I’m running out of energy and options from my specialist, who is awesome, but I’m at the end of what he can do. I’d appreciate any information, thank you!

July 24, 2012 at 11:03 am
(18) Dawn says:

Well, the worst symptoms I have had is chest pain (severe), nausea and vomitting (severe), tachyardia, frequent urination, painful muscles, anxiety, migraines, neck pain and oh ya the abdominal pain with bowel issues (gastroparesis).

August 4, 2012 at 6:18 pm
(19) Greg says:

I have fibro. When I get out of the shower and dry off it takes me another 3 towels to dry the sweat. I am so miserable! No doctor can give me a reason.

August 24, 2012 at 3:30 pm
(20) Mummylady says:

I was diagnosed with dysautonomia/autonomic nervous system dysfunction before I was diagnosed with FMS. I have most of the symptoms, and I take a very low does of propanalol twice a day to control my blood pressure issues. The worst for me are the intolerance to heat and humidity and the post-exertional malaise. My pc and my rheumatologist both believe the dysautonomia is very much a part and parcel of the FMS, for which I am grateful

August 24, 2012 at 3:53 pm
(21) Karen says:

I bought a pulseox finger monitor because i read that i should try to keep my heart rate under 100 to help control the fatigue. So, my heart rate in bed is 93. Putting on my shoes, 137. It is impossible to keep it under 100.
Attenolol and fludrocort, two rx drugs that I am on the control this, are not doing the job.

August 24, 2012 at 4:53 pm
(22) Tracy says:

I have them all; my dx’s are:
T1 Diabetes. Fibromyalgia, Sjogren’s, Chronic Ideopathic Leukocytosis ( high WBC for 18 months, with no identifiable cause, currently 23,800), Pancreas removed 2007, along with spleen. So compromised immune system, etc. Have since had 5 additional open midline surgeries, 2 for Complete Intestinal Blockages, caused bt the ridiculous amount of adhesions my body manufactures; 2 for Ventral/Incisiomal Hernias, which had me looking 6-7 months pregnant; and 1 to complete the Total Pancreatectomy with Auto – Islet Transplant (my insulin producing islets were harvested and shot into the portal vein of my liver), with a Roix-en-y (akin to a Gastric Bypass, but not for weight loss purposes).
Also have 3 herniated discs in my back, at L5 and S1, for which I’ve been receiving quarterly Epidural Transforaminal Blocks, which are becoming less and less effective. With all of these conditions, diet recimmendations contradict each other and it’s hard to discern which condition is causing certain symptoms, since they overlap.

I would say extreme heat or cold, debillitating fatigue and uncontrolled glucose levels (VERY hard to manage with no pancreas, even with an insulin pump and continuous glucose monitor), and extreme body pain are my worst symptoms. My newest med, prescribed for the dryness issurs associated with Sjogren’s, makes me exremely nauseous, which also affects my ability to eat properly.

It’s a constant battle to juggle all these things and pull off a GOOD day, but my husband and family are very supportive, even though they don’t really have a good grasp on all of my diseases and their effects. My church, prayer and support groups keep me going. and I try to show grace in the midst of my suffering, doing what I can, when I can and nit be guilted into something I know I’m not capable of.

Prayers for all of you who are sufferimg with quiet, or maybe not so quiet, dignity.

Blessings,
Tracy

August 24, 2012 at 6:15 pm
(23) Karen says:

I’ve never been diagnosed with this but seem to have most of the symptoms. I recently attended a week long yoga workshop for back problems. It was much more intense than expected. Four hours straight for 4 days of sometimes strenuous yoga positions. By hour 3 each day I was feeling light headed and diaphoretic. We did not get breaks. On that last hour i just couldn’t do as much as the others. I even tried keeping a bottle of juice and water handy but I still had a vagal response after the third hour. I had a small flare up of fibro after I got home. However my back felt great and that made it worth it.

I often have problems with postural hypotension and light headedness. Many of the medications prescribed for fibro and migraines just make this worse.

August 25, 2012 at 12:33 am
(24) sue says:

I have had all of the symptoms,but the worst are all of them at some point in time. my heart beats so loudly sometimes, it feels like it could jump out of my chest. I cried other day, because I just hurt so bad. When is this going to end. Years ago, before diagnosis my PCP just kept telling me I was depressed, ran all kinds of tests, all negative. I had no idea that i would end up with thisFMS. Going to bed now, for a little while.

August 25, 2012 at 7:46 am
(25) John says:

With eight years of trying to juggle symptoms that people have mentioned here, my heart goes out to those who struggle with these problems and do not get the proper medical help. If you are able to, visit a clinic that specializes in CFS.
If you are not able to, try to find a primary care doctor or immunologist that will take a close look at your immune system. After six years of negative tests and family members and doctors saying all of my problems were “in my head”, that changed when a doctor did a flow cytometry of my blood to see if my immune system was depressed. To her surprise, several elements of my immune system were elevated (B and T cells), but she could not explain why and sent me to a hematologist/oncologist. After seeing my third hem/onc, I am finally receiving some treatment.
The dysautonomia that I experience has been made worse by the treatment, but my own opinion is that is because my immune system is finally becoming strong enough to deal with a viral infection in my central nervous system. I believe this because signs of chronic infection in my skin and nails have been disappearing throughout the treatment, so it leads me to believe internal infections are being dealt with by the immune system as well. That is my hope anyway, as even mild exertion can lead to severe muscle cramping and a body temperature that drops below 95. But I can live with that since my pain levels have decreased and my sleep has improved.
I’m hoping that Ampligen is approved by the FDA this time to help all of us deal with immune systems that are out of control.

August 25, 2012 at 5:04 pm
(26) Helena says:

I can say “yes” to all of these but the sweating. For example, my heartrate is normally 70-80 but at times spikes up to 130 (for five minutes, then normal, then 115 for ten minutes, then normal, and so on until after half a day it decides to stay normal or at least at just 100). My fibromyalgia specialist (rheumatologist and researcher) says that he sees this a lot in his patients and in addition to dysautonomia he finds that another cause is a huge load of toxins released during a flare. So, he directed me to take activated charcoal (6-12 capsules) whenever I noticed the slightest beginnings of ANY neuro symptoms (depression/anxiety, tics, stumbling, weakness, and so on). I was dubious at first, but I’ve been amazed at how well this helps me. Within hours, my neuro symptoms are tamed (not always gone…but greatly lessened from what they might have become as per past episodes) as the charcoal helps to minimize the toxins by carrying them out of my body. Anyway, thanks for sharing all these helpful articles and such…and thanks to all the other fibromyalgia patients and your helpful insights.

August 25, 2012 at 8:01 pm
(27) Dee says:

Pat, had the same problem with dogs. They never stopped barking and I never slept. I was to sick to do anything about it. Now I would kick ass and get the police involved. Don’t let that go bye. Summon the strength to take care of it, it will be worth it in the long run.

August 25, 2012 at 9:45 pm
(28) Raquel (Brazil) says:

I would be of interest for us and very useful to understand the meaning of dysautomia in our body. Briefly it means that our sympathetic system is overreacting and our parasympathetic is no acting as it should. Both systems functions as antagonist if one is working the other is quiet Please, inform you about the functions of both systems, this will help you to manage your systems. We need to do whatever will help the parasympathetic to be more active as for example; to take hot bath in a tub, massages, yoga, meditations etc. In Oriental medicine this would be well understood as the “yin yang” equilibrium
There is not a “magic pill” it most DEPEND ON US!
There are well written books that explain how to treat the dysautomia they are:
“Figuring out Fibromyalgia” by Ginevra Liptan, MD
“Fibromialgia; El dolor incomprendido” by Manuel Martinez Lavin, MD
“La Ciencia y la Clínica de la Fibromialgia: Manual práctico para profesionales de la salud” by
Manuel Martinez Lavin, MD (The books are available from Amazon)

August 25, 2012 at 11:20 pm
(29) Staci says:

The sweat dripping down my my face and soaking my bangs is very embarrassing. I notice that this problem is most profound when I change from one environment to another. I do have many of the other symptoms as well, but I would do almost anything to eliminate the visible sweat.

August 26, 2012 at 10:32 pm
(30) Sr. Bethany Mary says:

This is a good subject and one we need to know about. I could not understand why all summer I sweat profusely to the degree that I will pass out unless I lie down in front of the air conditioner for up to one and a half hours and sometimes extreme weakness which keep me in bed for the day. I live in a humid climate with long summers and enjoy the cooler weather in winter in Qld Australia. My musculo-skeletal specialist just said my CNS is ‘up the creek’ – part of the condition so I deal the best I can with it. Extreme pain and exhaustion are very connected with this all. Greetings to al with these conditons and prayers. I am just pleasedI i live in a country bessed with generous social services and a good public health system. I do have some expenses not covered but with family help I can get these covered.

Sr Bethany Mary

August 31, 2012 at 4:15 pm
(31) mary says:

I have to get this off my chest! I’m really tired of seeing people recommend specific drugs or treatments to others. How many of you are actually qualified to do that? Believe me, I understand frustration with/doubt of traditional MDs’ knowledge of FMS and related illnesses, but if you’re not a doctor or don’t play one on TV, I don’t want your medical advice. Thanks and have a healthy day.

September 6, 2012 at 12:48 am
(32) Brooke says:

I am 32 for the last 3+ months I have been in constant pain! Hot all the time even when it’s 77 in my home, dizzy, irrational, angry… It started with pins and needles in my left arm and went from there; though when I look back over the last few years the upper back pain started in my 2 nd pregnancy (October 2010) and then subsided until my 3rd pregnancy (march 2012) which also subsided until June 5 2012… Everything came on so quickly and I get no answers :( have been through lots if blood work, heart tests, neck and head ct, xrays of my spine, all called anxiety and take your cymbalta! I won’t play medication guinea pig with my body! My spine hurts just to touch it or when my hair even touches it. It tingles in the T7-T8 region, drops me to my knees involuntary if anyone touches it… Xray shows nothing, all tests show nothing… I’m at my wits end! I was perfectly healthy and active and now I’m garbage! What happened to me? No one tells me anything but to take medicine but they don’t say what for… Anyone else with spinal tenderness? I feel so alone!

September 12, 2012 at 2:43 pm
(33) Steve says:

I am a 40 year old with fibromyalgia. For me, the fatigue and brain fog are the worst, following my muscle and nerve pain. Digestive problems/IBS, pressure in my ears, insomnia, inablity to exercise much are other problems…

October 26, 2012 at 10:16 pm
(34) lisa says:

I was so pleased to find this website! I suffer from terrible unrelenting pain in my back down my leg with unbelievable spasms! I hurt everywhere! IBS,migraines, neck, shoulder, terrible hip pain etc. I sweat so bad I almost pass out! Terrible anxiety! Have had several steroid injections all over! Cannot get a diagnosis! On top of it all I am a carepartner to my husband who has Parkinson’s, diabetes,
chf etc. Please help me! No where to turn!

January 31, 2013 at 4:55 am
(35) Alice says:

Ditto on lower and general back ache…more than normal sweating.. fatigue..unrefreshing sleep, sudden ache symptoms.. Have been as frustrated as all of you, with doctors raising their eyebrows, negative for disease, and family members humiliating me telling me I need to see a shrink. I am not sure about CFS/FB.. Rather I think doctors just come up with BS (Bullshit) to call like 80 or so mysterious general dysfunctions of the immune and nervous system…which by the way can handle a gun shot better than a vaccine or any foreign protein or chemical that will float around causing mounting stress. -Sayonara

February 12, 2013 at 7:52 am
(36) Lisa says:

I need help, I am suffering anxiety, lightheadeness, shaky, pins needles, neck painm back pain and every pain you can think of, this werid internal trmeor feeling and its freaking me out.. I have had MRI’s, CT scans, blood work, stress tests and all come back normal.. Im assuming its fibro acting up but its been years and its seems worse that ever. I was under stress from work and some personal things so maybe it reared its ugly head. I think the anxiety/panic attacks are the worse part. Its making it hard to work and my job is in jeaopadry from calling off all the time.. I get here and then I get the anxiety/panic and physical symptoms.. I have never taken meds for my issues because it usually all goes away but this time its not going away its getting worse and I can barely leave my home. Help!!!

April 20, 2013 at 5:27 pm
(37) virginia says:

I wad diagnosed with Fibro and CFS in 91.I also had a stroke in 2000.I have been Sweating badly for the last 7 years but haven’t worn winter clothes,eg;winter coat or sweater,for 17 years!When the sweating got worse about 7 years ago I went to my then GP with numbnes in my big toe and complained of a feeling like sand between my toes.I was told it was “probably”! Gout.I gradually have got worse,with both my feet having pins and needles 24/7 and no sensation at all when having a small needle type of thing touching them.It’s just like walking on glass and much worse at night in bed.In 2010 I was diagnosed with Type 2 Diabetes,Peripheral Neuropathy and now Autonomic Neuropathy.The Diabetic Clinic blamed the Fibro for the Neuropathy and discharged me.The Neuro Clinic blamed the Diabetes for it and also discharged me.The result of this is that I am under nobody for anything,I just see the GP and get my meds every month.I try to keep going but the sweating is much worse and I’m so tired.On Friday I was told I have to go for an Endoscopy because the sweating and palpatations and reflux is bad after eating anything.I just take a day at a time now and try to find something to smile about every day.Thank God I have a wonderful husband who’s supported me through everything as have our two children.I’m trying to look forward to our 40th wedding anniversary this December.I just hope I feel somewhat better by then.Thanks for letter me “rant”.

May 1, 2013 at 1:54 am
(38) Christina says:

Virginia…If the neuro clinic discharged you then you need to find a new neuro and esp. one familiar with diagnosing neuropathy…ask your doctors for an EMG & NCS of all extremeties and anywhere else you have numbness loss of feeling etc…nerve conduction study…to diagnose your neuropathy….if you have large fiber neuropathy it will show up on EMG & NCS….if it is small fiber neuropathy it will not show up on these tests and then they should order a skin biopsy to diagnose if it is small fiber neuropathy….also google Benfotiamine (B1) for small fiber neuropathy….I have neuropathy (along with fibromyalgia and dysautonomia) and Benfotiamine helps a lot with the neuropathy pain and numbness…hope you can find an good doctor to help you.

May 29, 2013 at 7:47 am
(39) coronary heart disease says:

I tend not to create a ton of comments, however i did a few
searching and wound up here Dysautonomia in Fibromyalgia & Chronic Fatigue Syndrome.

And I actually do have 2 questions for you if
you tend not to mind. Could it be just me or
does it give the impression like a few of these responses look like they are
coming from brain dead people? :-P And, if you are writing at other social
sites, I would like to follow anything new you have to post.
Could you make a list of the complete urls of your communal pages like your Facebook page, twitter feed, or linkedin profile?

June 3, 2013 at 6:53 pm
(40) Barbara says:

I was diagnosed with CFS in 1988 after being very sick for a couple of years and seeing many doctors who did all kinds of tests which did not show anything wrong. And, yes, some of my docs thought I was depressed! But I finally found a doctor who gave me a diagnosis, but he did not know how to treat it. I finally found a doctor who specialized in CFS and FMS (I was diagnosed with this a few years later) and I have been seeing him ever since. There is no cure, but he gives me medications to help ease the symptoms. I am totally disabled..these illneses have just about ruined my life!! I live every day with severe pain all over my body, profound fatigue. I also have the profuse sweating that some of you have talked about. Like some of you described…..profuse sweating to where my hair is dripping wet like I have just washed it, the sweat drips onto my glasses, my clothes become drenched, I can not wear makeup at all because the sweat washes it off very quickly. It is extremely embarrassing to say the least. I have no social life at all. But I just found the comments here from some of you describing how bad your sweating is and I was like, yes! There are others like me! I had not heard about dysautonomia before. The only thing that I have found that will stop my sweating is to go lie down for at least 30 minutes or take a cold shower or to let cold water run on my head. My face also gets very red during my sweating episodes. I don,t know if this has helped anyone else or not, but I hope so. I don,t know if you can respond to posts on this site or not but if anyone wants to talk with me I guess you could leave a comment and then maybe chat on Facebook. God bless all of you who left a comment, for I know you must be suffering if you are on this site.

July 12, 2013 at 3:31 pm
(41) http://welearnmusic.org/mahara/view/artefact.php?artefact=2162&view=490 says:

Dysautonomia in Fibromyalgia & Chronic Fatigue Syndrome

July 26, 2013 at 5:26 pm
(42) acid reflux causes stuffy nose says:

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September 3, 2013 at 2:51 pm
(43) Kay says:

I am 42 and have had fibro for probably about 13 years. I have all of the symptoms listed except blurred vision and fainting. The starting thing is ridiculous for me! Ahh! BUT, I would encourage everyone to look into physical therapy. I have been working with a physical therapist for about 6 months and have had a huge improvement in my pain and improvement in mood and depression. I have had exhaustion flares, but only one pain flare in that time, and I am not always faithful in my daily exercises. It has been encouraging to be actively engaged in improving my condition and head towards maintenance instead of just dealing with one pain crisis after another. I have also been able to have combination appointments with an on site massage therapist and only pay one co pay. The best news of all… I have found that sex helps my fibro! If you haven’t tried it in a while, give it a whirl! Now, if they can figure out this sweating thing… I will be a really happy woman!

October 17, 2013 at 12:46 pm
(44) brian White says:

Check out Dr Arata and synergy health concepts. They use balloon angioplasty to shake up the vagus nerve and “reboot” the autonomic nervous system. My Wife Jade had the treatment with darn good results. Brian

March 4, 2014 at 11:27 am
(45) Diane says:

For all the people who have a lot of sweating or flushing, have you looked into mast cell activation disorder? It sometimes goes along with dysautonomia. Also, I have neard that sage leaf reduces sweating and hot flashes.

March 13, 2014 at 10:47 am
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