angelloz

I use tiger balm patches. I do get random middle back pain, not coinciding with physical activity. I ALWAYS have right shoulder pain. I think I should check this out but with everything else...... Sometimes I ache as if with the flu. I have wondered about the connections with fibro and autonomic issues?

I think this is very normal although more pronounced for us due to the blood pooling making hand and arms looking darker than most. I had a magic trick book when I was very young. One of the tricks was to tell a friend to hold one hand up while you have your back to them. Then you wait a bit and have them put it down. You turn around and tell them which hand they had up. The trick was to pick out the hand that was paler. I too have the bulging blood vessels. My husband will get this when it is very hot, but mine is frequently since the dysautonomia.

Hello, Feel so badly for your friend. A few thoughts, I have been diagnosed with MCAD but don't run fevers unless I am ill with something else. I also had a positive ANA when I had testing done at the Mayo Clinic, it said this went along with Lupus so I was referred to a rheumatologist. He said there would be more than one type of ANA that showed positive so it was dropped. Wish I could help more! Hopefully they can find a doctor that will want to get to the bottom of it!

I take some aspirin...but having said that I have severe unbearable migraines and have to take things that my body does not like. IV meds at the hospital make me feel like I am harming myself more. These medications are a big problem for me but....the type of head pain I have is so profound it is unbearable. I do tolerate tylenol pretty well. Aspirin does not make me feel very different.

I have the same migraine problems and use Olia ( an oil base one ). It does not have a strong smell at all , you can get it at Walmart, Target etc.. It is by Garnier. I don't use the conditioner that comes with it though..too much of a perfume smell for me. I have brown hair so don't know how well it works for blond.

Oh yes!! Just had this happen myself. Was feeling like I had made some progress and was managing symptoms, then.... My grandchildren visited and brought along the flu. I actually had two illnesses back to back and then a 4 day migraine. Now I am having appetite problems, energy issues, breathing, weak jelly legs...sigh. I feel like my body just can't handle much or I head backwards. I am trying to figure out how to recover. So far just not happening. I hope you start going forward again quickly! I will let you know if I figure out anything that helps the process.

Mine developed right after a tetanus booster and I always suspected......

When mine is too low I elevate my feet, keep drinking...cold water I was told.

I have hypovolemia and many breathing problems but my oxygen saturation is fine when I have checked it. I do remember reading somewhere that it does not mean everything is fine. There is some sort of test where that would take blood straight from an artery...which I hear is painful. In any case I would ask my doctor to be clear about whether or not it needs to be investigated. I know...always another thing to check up on.

I know I did this...especially at the beginning of my journey with autonomic problems. I think I would hold my breath and not realize I was doing so. I also would sort of forget to breathe as I was dozing off. If I could get to sleep at all. It is better now. I still have episodes when no matter how slow or deeply I breath it feels like I am not getting enough air. Hang in there..I have heard of others with the same issues!

Years ago people did not have a resource such as this. it is wonderful to have a place to share and support each other. I can't imagine sitting at home with no way to connect with others that know what this is like. Many thanks!

I know it works well for some but I was unable to tolerate it. I am still searching for a prophylaxis that I can take. I have tried many. It may be just right for you so it might be worth a try. Good luck!!

concerned hubby, A few more details from angelloz. I started with feeling wired and unable to sleep, head pressure, severe feeling of extreme heat ( just turning over in beds would cause this. ) Numb spots, a feeling of not getting enough air, digestion issues, extreme weight loss that I didn't want and more. Five years later I can now sleep more, fewer heat issues, gained back a bit of weight, breathing issues come and go. I have a few new issues such as pain in my hands and more body pain overall. I had developed some numb spots on my skin, one on the side of my knee that has some feeling now. I have hypovolemia diagnosed at the CC. Some autonomic neuropathy ( Mayo Clinic ). the constant odd off feeling I had is lessened. I also often felt very tilted and off balance, that is better as well. I still have scary episodes where I get a blood pressure changes, shaking, weak and collapse or have pre- syncope. These occurrences are less frequent. I think I had some issues when I was young but not as bad and didn't even realize that what I felt wasn't " normal. " Don't know if I will have any other improvements or changes but I keep thinking that less hormonal shifts are helping.

Well said Katybug!

I have asked my doctor this and like the rest of you , I was told, " if the pain feels different". Yes it varies quite a bit..even in location. Middle of chest , left side , back spasms, nausea, clammy, my EKG in the ER have been slightly off at times. was told jt could be lead placement etc... My cardiologist looked it over several times and is not concerned. I have laid there many times..cell phone in hand thinking 911 or not.....I try deep breathing staying calm and prayer. Good luck to all!

I believe mine started during perimenopause...age 50. It was so bad that my periods stopped abruptly! Now I am 56 and have felt some improvement. I will post more details later but I agree that hormones play a role!

That is a trigger for me as well. All ham seems to be processed with that. My horrible migraines last 3 days so glad to hear you are in the recovery stage. Take it easy!

I understand the concern but It will be OK. I had it done twice. Once showing mildly reduced blood volume and the next time showed moderately reduced. The second time was not pleasant as they had trouble drawing the blood at each interval and had to tug and pull on the IV. But good information to have!

I have shoulder pain in my right shoulder constantly to varying degrees. I use tiger balm patches to help with the pain. I try to keep the pain level down as it can cause my head pain to increase. Haven't seen a doctor about it as there is always so much to see a doctor about. Let me know if you learn anything about it. I think it would help my head pain to treat it but just guessing about that. Good luck!

Migraines began for me around age 30. I am now 56. Tried absolutely everything there is to offer. When autonomic problems started in 2010 I also developed a constant head pain...more pronounced when standing. Sometimes have drooping eye with migraines.I also get shoulder pain , all of my teeth hurt, and so on. They are mostly right sided. Mine are very severe, to the point of researching surgery. Lately with daily ginger and some aspirin the severe ones are farther apart. However when I get a bad one it lasts 3 days with no sleep , vomiting etc... I go to the ER for fluid loss which causes all sorts of problems. I don't tolerate pain meds anymore so .....it is pretty awful. This is the one thing that causes me the greatest distress.

Thanks to all. It helps so very much to have your thoughts and support!

Hello All, My mother passed away from colon cancer and since I am having some bowel problems I must have a colonoscopy. I have scary problems with medications and have not been sedated since my autonomic problems began. Has anyone out there had this test done. Any tips, advice, or other information about your experience would be great!

It is wonderful to have new members, new thoughts and experiences!

Yes Yes Yes...strong emotions ( positive or negative ) have an effect on how I feel. I will often start to feel fuzzy, hot, unwell.

I have the weight issue since autonomic problems started. Lost 30 pounds rapidly. I have gained back about 10 but struggle to maintain. Due to everything causing severe migraines there is very little I can eat. I hope your neuro can help. It does seem that symptoms fluctuate and change.