Dysautonomia in Fibromyalgia & Chronic Fatigue Syndrome

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.

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.

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.

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

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.

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.

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!

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?

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?

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.

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.

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

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

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 .

@ 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.

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.