Canadagirl

I feel like I have an aversion to so many foods--and I think dairy is now a problem and possibly bread.

How did you figure out if you have these problems, and what do you eat if you do?

I am really struggling with what to eat--having the same thing over and over again.

thanks

Hi, I have times where it feels like parts of my body are boiling hot. This has happened off and on for years. Sometimes others can feel the heat coming off these areas too. I've recently been having it feel like it starts in my stomach and spreads out from there. This occurs suddenly when I haven't eaten or drank anything. It's very disturbing. I also have painful cold sensations. I don't have any knowledgeable doctors who can tell me what causes it. I have POTS, Fibromyalgia, Chronic Fatigue Syndrome (CFS/ME), Multiple Chemical Sensitivities, Raynaud's, GERD, Severe Allergies, Dermatographia/Dermographism (Skin Writing), Migraines, etc. I also have had constant electrical shock and burning sensations through my whole body for 5 years. The electrical shock sensations started after someone rear-ended my car again. I also get numbness, pins and needles and shooting pains.

Right now I especially have it on my ribs under my breasts and my back. They feel so hot to the touch. I also have CFS, MCS and skin writing--but it is transient and only appears in the evenings (and temperature fluctuations and weird blisters and red spots on my tongue). I just had a mammogram and looked like I had a sunburn afterwards. My mom has the electric shock sensations. She got hers in her mouth after getting a wisdom tooth removed and in her legs after a bone density scan. I too had weird cold sensations in my arms and legs--they were really pronounced the week before my Autonomic Dysfunction hit me. We sound quite similar. I't's a relief to hear you have had the hot sensations for years--it must be benign then!

Thanks for sharing yor story--it helps to know we are not alone.

This is a new one for me. Just wondering if anyone else had it.

Before I felt like my arms and legs had ice running through them--now I just felt like my organs in my torso are boiling hot. I also had this on the back of my head last week.

Years ago I had this in my left foot and it was a parasthesia--I wonder if it's the same thing.

Anyone? It would be nice to know I'm not alone on this one!

Sometimes I get an involuntary cough after walking or stress or sometimes during brushing my teeth. Sometimes I get chills first. Then I start sneezing.

Anyone else get this?

(This is a day when I am wondering if I am the only one with certain symptoms!)

Anna, my son has juvenile onset arthritis, a genetic kind called spondyloarthropathy, or ankylosing spondylitis. It has an inflammatory bowel component. Plus other marvelous things. He's been sick since he was 11. he's 25.

Anyway, he was having a lot of gut pain and couldn't get his bowels under control. His GI doc just incidently ran labs on him because of his fatigue levels. His thyroid test came back okay, but his PTH or parathyroid hormone came back very high. His calcium was high normal.

This was discovered about 4 years ago and no one, not one person, including his endocrinologist has investigated to see whether it's primary or secondary. His Gastro insists it's not malabsorption and the endo says it must be. I actually brought up MEN to her and she said it wasn't neccessary to check for anything like that, as long as his calcium levels weren't too high. I am as frustrated over his care as I am mine.

He is on calcitriol. She has said it's primary and she has said it's secondary. No ultasounds or anything have been done and he sees her ONCE A YEAR. His rheumy believes he has a tumor, but won't step on the endo's toes...I hate that. You know, just let people die as opposed to giving them decent care, as you may offend a peer. Besides, he has been out due to a liver transplant he received and Jake now sees a nurse practitioner as the other doctors in the practice refuse to see his patients. This is what we deal with here.

I have thought about MEN and researched it. Since it's not clear anyone else has had it (we do not know very many medical histories of family members) she won't even consider it. Although not one person we can find has a history of his genetic arthritis either.

I have been there with everything, becoming quite the researcher, as we seem to have gotten every lazy incompetent doctor in the USA here......oh, sorry. he does have a tendency for tachycardia, he is very pale, and has a very low threshold for activity. he is not a fainter, but anytime I have done orthostatics on him, he drops significantly. I worry he is going to develop full blown symptoms however.....

Have you ever talked to Dr Norman about your son's parathyroid?

http://www.parathyroid.com

I had my parathyroid surgery done with him two years ago. Dr's here said my calcium wasn't high enough but I learned that doesn't mean anything and can still cause symptoms. Dr Norman is excellent and will take emails before you ever even get a referral. I was tested for MEN1 but the endo said I didnt' have it. Not sure exactly what tests she did to know this. It's interesting, the other girl I know with autonomic dysfunction also had her parathyroid out around the same time I did.

The people on the parathyroid list also have lots of strange symptoms just like us over here!

Lately I have had blisters, a patchy looking tongue and red lines on it. The little blisters and red lines only seem to come out at night.

Anyone else have this?

(I also have a bad taste in my mouth when I walk or am upright).

Does anyone have persistent diarrhea?

I was having formed stools with undigested food visible, but the past 4 days I have had diarrhea. I have also had a (almost bitter) taste in my mouth every time I walk and some nausea. The taste and nausea tend to go away when I recline.

It also feels like my stomach is always empty and when I walk with an empty stomach I start to cough and wretch a bit.

Anyone else have this?

I'm not sure if I should take immodium or something.

I have quite a bit of trouble falling asleep and staying asleep. One thing I've noticed that makes this worse is when I push myself durring the day and do too much. I'm not sure if this is true, but what it feels like is I start to run on adrenaline. When i go to bed I feel horrible....beyond exhausted, sick, and chilled. I can't fall asleep for hours. Even though my body is wasted, it feels like it can't unwind because of the adrenaline. Can anyone relate? I try to avoid getting to this point, but it happens SO easily and some days can't be avoided. Have you found anything that helps with sleep at this point?

I totally had this for years! Taking a very small dose of valium and propranalol (beta blocker--blocks epinephrine) allows me to sleep and I no longer feel the adrenaline at night. I also find that sleeping from 2am to 9am helps me get the best sleep. I hope you find something that works for you

Edit==I also find that doing a relaxation exercise during the day settles down my adrenal glands. When I feel like doing it least is when I need it most!

Are you eating lots of salt? Gatorade helps, but it is actually pretty light on salt in the grand scheme of things. I find I have to drink lots of broth and eat plenty of salty foods. And if adding salt to your diet isn't working, you may want to consider meds that make you retain salt, such as florinef.

I used to drink tons of diet soda and gave it up for a while when I had POTS. But I've found it's really hard to keep up my fluid intake. There is only so much water a girl can drink. I do have a diet soda here and there, just to add some variety. But I mostly drink water or broth, which is high in salt.

I take a saline IV once a week. I feel better that evening, into the next day and a wee bit better into day 3. I also drink about 12 drinks a day with Italian Sea Salt (just enough so you can taste it). About 8 glasses of room-temperature water and 4 that are 1/4 white grape juice and 3/4 water --also with the sea salt. I have found this to work best for me so far through trial and error. The juice seems to be a good balance with the water only for blood sugar without it being too much. I find if I drink 2 glasses of salt water and 2 of juice within an hour of waking up it really helps me feel better than if I didn't do this.

My mom had sent me this on Italian Sea Salt

"Italian sea salt is produced from the low waters of the Mediterranean Sea along the coast of Sicily. It is a natural salt rich in minerals such as iodine, fluorine, magnesium and potassium with a much lower percentage of sodium chloride than regular table salt. The salt pans are filled with the seawater in the spring and left to evaporate relying on the heat of the Sicilian sun and strong African winds. Harvesting takes place once the water has evaporated and it is crushed and ground without further refining. These salts have a delicate taste and plenty of flavour without being too strong or salty"

I had been using table salt before that and found that this tastes better and gives me a little more energy. You need to use more of it than regular table salt.

Hope this helps.

...Wondering if it's just me.

When I feel better they are the same size--really bad and the right is larger than the left...

This was recently discussed I think...did you search already?

I think I was out of town during that discussion but I do have GERD and episodic gastroparesis and am curious because I have such a hard time with vinegar!!! Just the thought of vinegar gives me heartburn!

Could you post where you read about cider vinegar cause I'd like to read and understand.

thanks,

tearose

Hi,

Here's the link.

http://ezinearticles.com/?Myths-And-Truths...r&id=445613

and the quote:

"Gastroparesis is a complication of diabetes. If you have slow digestion, you can take vinegar to help. The most common dose is one to two tablespoons 20 minutes before eating a big meal. Mixing with water or other liquid is ok."

My naturopath recommended it so I wanted to look it up and see if she was on target--and found this--but if anyone here has tried it I'd love to hear about it. She said it could be mixed with water. (or in my case, salt water!) There are lots of books and articles on the health benefits of ACV but I wanted to make sure it wasn't contraindicated for gastroparesis.

http://www.anyvitamins.com/apple-cider-vinegar-info.htm

I also have huge body temperature regulation problems so that will be a nice side benefit if it helps for that as it says in the link above.

I did a search but didn't find anything on vinegar. I should look up gastroparesis in a search when I have the energy.

I just read that taking apple cider vinegar 20 minutes before a meal can help with gastroparesis.

Has anyone tried this or had any success with it?

If not, any suggestions on what helps you with this would be appreciated.

Hi

I was thinking more of a long term thing for settling down a person's nervous and endocrine/adrenal system--rather than a quick solution for an active medical problem like a pots attack. I have many of the symptoms of AD.

In any case, I'm going to try it--I was just hoping to hear from someone here that it had helped in their recovery over the long term, and it does sound like one person found it to be positive.

I vaguely remember hearing cancer patients using visualization as part of their treatment and sometimes it actually potentiated other treatment they were getting.

Although I have only tried it for a few days, I am pretty much bedridden and do feel a bit stronger after I have finished a session. I think my adrenal and nervous system have been in overdrive for a long time too!

I don't have much else to keep me occupied with my severe fatigue in bed--so it's worth a try!

My doctor suggested this would calm the sympathetic nervous system and help.

I just started trying it--going into deep relaxation for half an hour twice a day starting with my toes and slowly working up relaxing each body part till I get to my head--synchronizing my breathing to relaxation music with ocean sounds--around half way through when I'm in the "relaxation response" I start telling myself that my body is healing and go through each symptom and tell myself it's healing.

Has anyone else tried forms of this and over the long run did you find it helpful?

Welcome!

I think a lot of us have had better times and worse times. I'd like to add my recent experiences since you asked about someone who was bedridden and then got better. I spent last summer in a hospital, in a nursing home, and then home mostly in bed. But by the fall I was going to work part-time in a wheelchair, then a a few more hours without even needing the wheelchair, and I've just gone back to working full-time. I'm still really struggling to work full-time (my days off I rarely make it off the couch and such), but I'm doing about 500% better than I was this summer. I figure it's some combination of medicine, luck, and determination.

My temperature seems to flucuate too, but not as dramatically as yours. And it doesn't really seem to be tied to much of anything. Although I have noticed that if I feel feverish sometimes my temperature is actually low (around 95.5-96.5) rather than high. Do you notice that low temperatures make you feel bad or is it just odd?

Thank you so much for this encouragement! Can you attribute your recovery to anything in particular? What meds made the biggest difference.

Thank you for sharing!

PS My temperature drops when I sleep and when I walk. When I wake up and it's low, I feel cold and in a sweat on the back of my head and neck. When I walk my temp starts at around 98 and goes lower the farther I walk (over a few minutes). My legs feel cold when I walk and my temp is dropping.

Thank you all so much for your suggestions.

It will take me a while to research them as I can't get on the computer much.

My husband has ordered 'When bad things happen to good people" from the library as a start, and I will check out the others as I can.

I really appreciate everyone's ideas and input.

Thank you.

I am still in the disbelief, grief stage of this diagnosis. (aka I cry alot and feel stressed and overwhelmed!

I want to have the best possible attitude because stress of course will only make things worse

Can anyone recommend a good book on coping, or affirmations, or dealing with disabling illness that they found to be uplifting and helpful?

Thank you.

Welcome to the forum--although I am sorry you are feeling so poorly.

Most people with POTS improve over time. However, many also continue with some level of chronic (usually mild) symptoms, including hypovolemia. Many of us feel best with daily fluid and salt loading for that reason.

Katherine

Thanks Katherine,

Right now I am drinking about 12 to 15 salted drinks/day when I don't get the IV. I dont' feel remotely human in the mornings till I have had 4 to 6! I just pour table salt in water and diluted white grape juice. I don't even taste it but I know it helps.

My MIL had a stroke this summer and her body is healing so nicely--I was hoping hypovolemia was one of those things the body eventually would re-regulate.

My best time of day is very very late at nighjust before bedt--like I finally have enough blood volume to carry on a conversation. Then poof it disappears when I sleep!

I am new to the group with a million questions and SEVERE fatigue--prettty much bedridden and using computer is difficult.

Does hypovolemia ever correct itself? I am getting IV once a week and it helps a bit. Is this permananent or one of those things that the body will eventually self correct?

thanks for any experience

Thank you all for your welcome and replies.

I am especially interested to hear from people who have been bedridden and then improved. Also temperature fluctuations. After a shower my temp goes from 98 to 94.8 for a bit. It fluctuates wildlly from second to second.

thanks again.

Welcome Heather.

I was also diagnosed with CFS 16 years ago after Mono. I had a flare up last December and was diagnosed with POTS a year ago this month. I have many of the same symptoms. The night time tachy is pretty persistant for me, however I think florinif has helped a bit with this.

I hope you can find some help with your symptoms. I have found it to be very up and down over the last year.

Take care,

Rhonda

Thanks to everyone for the replies!

Rhonda, how did florinef help you? Were you hypovolemic?

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> Hi everyone. My name is Heather and I live in Canada. I have recently been diagnosed with Autonomic Dysfunction because of the severity of my symptoms, but I may have had it in a milder form for about 15 years, as I had been diagnosed with Chronic Fatigue Syndrome.

>

> As an intro to the group, I would briefly like to describe my symptoms and ask if I sound like anyone else here. I must be semi-reclined all the time in bed or a recliner due to overwhelming fatigue (I walk a couple of minutes at a time as often as possible, for a total of 20 to 30 minutes a day). Otherwise, I must be semi-reclined and wear support hose.

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> Here are my current symptoms--I am basically in bed all day except for the walks that I force myself to go on every hour or two for a couple of minutes. I must be semi-reclined otherwise and have extreme fatigue--even a short conversation leaves me depleted (I feel just awful in the morning until I have had around 6 glasses of salt water to drink). Better after dinner but still bedridden.

> * POTS

> * OI

> * Severe body temperature fluctuation (from the 95's to the 99's in a matter of minutes, sometimes seconds)

> * Walking gives me chills (my temperature goes from 99 to the low 97's or 96's in 3 minutes)

> * My temperature drops when I sleep and I wake up in a cold sweat on the back of my head and neck (my temp is in the 95's or 96's); I also feel my heart pounds harder when I sleep

> * I have low appetite and undigested food in my stools

> * I now get over-stimulated very easily--even having a perfect temperature shower while seated feels be ovestimulating for me

> * I am very dry in the mouth and must eat very wet foods to get any food down (I only feel like a few, bland foods)

> * Any physical or mental exertion depletes me and makes me feel like my brain isn't getting enough fuel

> * I seem to be hypovolemic based on how much better I feel after an IV (but still not well enough to do anything significant--just feel better and have a little more energy

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> These more severe symptoms (above) started on November 20th; the sitting intolerance and greater weakness (being bedridden) started December 29th when I got my period.

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> I am currently doing the following to treat my symptoms:

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> Wearing compression hose

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> Elevated head of bed

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> Walking every hour or two as tolerated

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> Increased salt & fluid intake

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> IV (once per week) ? responded very well to these

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> Oxygen (15 min. 2x a day)

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> Propranolol - 5mg every 6 hrs. (started taking Nov. 20th, 2006)

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> Does anyone else have similar symptoms? I really want to connect with someone who can relate. Even more important, has anyone ever been so severely fatigued and affected by AD and then improved their quality of life?

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> I look forward to hearing from anyone who would like to relate to what I am going through. I'm feeling very isolated right now and particularly desperate for some encouraging news from someone who has been where I am and has made any type of improvement. (This post has taken me days to put together).

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> Thanks!

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> Heather

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