Skin Complaints

[Garrettrichard]

Heyy, Sorry to ask so many questions, But I'm new to my POTS condition and i have so much to ask

Sometimes with my POTS i experience a skin ache sensation, Its almost like the ache you get with

the flu but not near as bad, Just enough to bother you.

Do you guys ever have any skin complaints with POTS, If so please share what you feel and

please tell me if you feel the same symptom.

Thanks guys.

Garrett

[potsgirl]

I get the same thing you do....but it feels just like the aches and pains of flu. I'm looking into CFS/Fibromyalgia as a source, since I have achy arms and legs almost every day now, along with extreme fatigue and weakness.

Hope this helps,

Jana

[Garrettrichard]

I get the same thing you do....but it feels just like the aches and pains of flu. I'm looking into CFS/Fibromyalgia as a source, since I have achy arms and legs almost every day now, along with extreme fatigue and weakness.

Hope this helps,

Jana

I hope its not Fibromyalgia

I always thought you had to have a bunch of certain pain points on your body for that.

I just get an area or two that seems hypersensitive for a day or so.

Best of luck

Garrett

[summer]

Hi Garrett,

Sorry to hear you are dealing with all this at such a young age. I have lots of aches that go along with my POTS, but I feel them more as muscle aches. I do at times find that my skin can be very sensitive to pain as well. Chronic Fatigue Syndrome is often associated with POTS, and the symptoms are very similar. I was diagnosed in Montreal and was given both a diagnosis of POTS and CFS. My specialist there told me they often go together.

I see you are from PEI. Do you have a doctor close to home who is able to diagnose and treat your POTS? There don't seem to be many doctors in Canada who are knowlegable about POTS or dysautonomia. I'm just wondering if there is anyone east of Montreal who treats POTS.

Summer

[janiedelite]

Yes, I have the aching in my skin, muscles, and extremities. I also have burning skin mostly in my arms, legs, face, and mouth, but sometimes everywhere. They all came on at the same time, so I believe they are all a part of my neuropathy.

What has been effective:

- mild exercise (I'm talking very mild, but regular movement)

- hydration

- compression (helps my leg pain)

- lyrica worked wonders, but I gained weight and it was a bear to get off of it

- I'm now trying clonidine, which is proving helpful also

What makes it worse:

- Stress

- Too much or too little activity

- Heat (although a warm bath helps sometimes)

[Garrettrichard]

Thank you guys for the posts

Summer I was fortunate enough to get a doctor that was really good in my home town.

The first time I went to see him he knew what POTS was and was able to give me the diagnosis.

As for treating it I only add more salt to my food and drink lots of water and try to stay as active as possible

This seems to work fine for me considering I have a more mild case of POTS.

Thanks again guys I appreciate all the help.

Garrett

[summer]

Thank you guys for the posts

Summer I was fortunate enough to get a doctor that was really good in my home town.

The first time I went to see him he knew what POTS was and was able to give me the diagnosis.

As for treating it I only add more salt to my food and drink lots of water and try to stay as active as possible

This seems to work fine for me considering I have a more mild case of POTS.

Thanks again guys I appreciate all the help.

Garrett

Garrett:

That's great that you were able to find a doctor close by who knew about POTS, and has been able to help. Was he a specialist? If so what type (neurologist maybe?). I'm impressed that someone in PEI knew about POTS and was able to diagnose you.

I'm glad you find that your condition is fairly mild. Yes, increasing fluids and salt is key. I think also just having an understanding of what is going on in your body helps. The dysautonomia information network has a good dvd available that does a good job of explaining POTS and treatment options including lots of non-medication type treatments. It also lists lots of symptoms that are common in POTS - sometimes things you would not think were related. It is very good for helping families or doctors, or even newly diagnosed patients understand the condition.

Take care!

Summer

[Garrettrichard]

Thank you guys for the posts

Summer I was fortunate enough to get a doctor that was really good in my home town.

The first time I went to see him he knew what POTS was and was able to give me the diagnosis.

As for treating it I only add more salt to my food and drink lots of water and try to stay as active as possible

This seems to work fine for me considering I have a more mild case of POTS.

Thanks again guys I appreciate all the help.

Garrett

Garrett:

That's great that you were able to find a doctor close by who knew about POTS, and has been able to help. Was he a specialist? If so what type (neurologist maybe?). I'm impressed that someone in PEI knew about POTS and was able to diagnose you.

I'm glad you find that your condition is fairly mild. Yes, increasing fluids and salt is key. I think also just having an understanding of what is going on in your body helps. The dysautonomia information network has a good dvd available that does a good job of explaining POTS and treatment options including lots of non-medication type treatments. It also lists lots of symptoms that are common in POTS - sometimes things you would not think were related. It is very good for helping families or doctors, or even newly diagnosed patients understand the condition.

Take care!

Summer

Summer:

I found it surprising that my doctor knew what POTS was also, I to thought I would have to at least travel off Island to get a diagnosis.

The doctor I have is an Internalist, not only that but once I was diagnosed I told my family doctor about it and he knew of the condition right away. Haha,

Maybe us islanders are smarter then you think lol

Thanks Again for the posts and the suggestions.

Garrett

[summer]

Maybe us islanders are smarter then you think lol

Thanks Again for the posts and the suggestions.

Garrett

Garrett, Some of the smartest people I know are Islanders

All the best!

Summer