Noreen

I also have a great deal of situational stress. I don't know if it is the cognitive issues, pain, or what but I am not able to mediate on my own as I used to. I find

I saw some really nice vests online but just can't afford them right now. Does anyone know where I can find one cheaper than that or perhaps a used one?

These ice blankets are worth a shot.

http://www.amazon.com/gp/product/B001G7QGT...m=ATVPDKIKX0DER

They are certainly better than nothing. I've only used one of these I had bought from the grocery store for $10 in a pinch. Obviously amazon's is a much better deal. I could envision using industrial velcro on the inside of a man's tailored shirt or a windbreaker and on these to hold them in place to get some relief.

Just an idea - at the least you'll be able to use them for coolers for your family.

MTBI (Mild) or concussion can apparently still cause lasting effects. There is this article here relating TBI & POTS:

http://www.dynakids.org/Documents/POTSfollowingTBI.pdf

Eric-

Thanks for the link to the article. My full faint resulting in my NMH dx 7 years ago caused a rather nasty concussion - happened at Old Navy and their tile floors are not soft. I've had other concussions from car accidents also and had no idea these all played into the dysautonomia puzzle.

Tks again,

noreen

Sorry you have been having a bad time with the heat.

I get muscle weakness like that related to my fibro dx or at least that is what they have been telling me for 20 years. Mine flairs when the barometer is changing such as there is a storm front moving in.

Has anyone ever tried Provigil for fatigue/tiredness? My doctor prescribed Ritalin and Vyvanse in the past and I find these can be helpful, but increase my fatigue when they wear off. Experiences/opinions appreciated!

I tried Provigil years ago. It helped with the fatigue but not completely. I have had the best luck with the short acting Adderal.

Well after 3 days of being on bystolic .5 mg I am quite shocked it's actually working!!!

How wonderful that you found a med that works for you - I'd love a day of energy

hope it continues to help

noreen

it was a very tiresome task taking up to 15 minutes just to get a shot of juice, eventually after a few months doing that everyday I finally gave up on it.

Endure-

Did it help at all?

Maxine-

Glad you made it home okay despite the pain from testing.

thanks for sharing the info on the conference. It really does sound terrific. How wonderful that your husband supports you in this.

Rest up -

noreen

Wonderful, wonderful, wonderful! With your newfound health you can enjoy your little girl more and more. Amazing sometimes how things work out - I remember how nervous you were about a toddler rather than a school-age child.

I'd go a bit slow with commitments if I were you, though. I am just worried about a relapse. You probably are thinking of work a day or two a week which is probably doable with the child.

As a plaque on my kitchen wall says..."Until further notice, Celebrate Everything!"

noreen

I have severe blood pooling in my legs, and when I try to lay in the sun it pools even more. Mine can look like red and white splotches on my skin, but I don't know if that is what yours was or not. Sounds like Reen has some ideas on a rash it could be. Unless it seems to itch and really bother you, I would just ignore it!

Does it matter what position your legs are in when you sunbathe or do the splotches appear whether you were laying down or sitting up?

How long does it last?

Reen~

Thanks for the reply. No, it hasn't gone away. It's just been getting steadily worse, and any movement at all (like typing) is extremely painful. I can hardly stand it. Do you think I should try Glucomasine (sp?) first? I do have a name of a good rheumy, so I'll call there, too. What's yours like?

Cheers,

J

Glucosamine is for osteo arthritis - the wear and tear variety. There are 171 different types of arthritis. It usually takes a while to get a new patient appointment.

Aspirin, alleve, motrin are the over the counter drugs to try. If it continues to be bad you may have to go on the wonderful horrible drug prednisone. It all depends on the rheumy. It took me six months to get my first appointment and I thought I was going in for a fibromyalfia consult 13 years ago. First appointment I was dx with fibro and benign joint hypermobility syndrome. and given blood work. Two weeks later my hands blew up and I went back in, found out I had a positive RA factor, put on prednisone and began the autoimmune waiting game - it was probably another year or so before the dx became official.

You should go to your primary doc in the interim - he/she should test your sedimentation rate and c-reactive protein and prescribe prednisone to alleviate the pain and inflammation as indicated. I broke my big toe during a flare and had no idea because the bone pain from the flare seemed the same. It feels like you are walking on broken glass and your hands have been smashed by bricks. Obviously this is just my experience but if I were you I would not delay getting it checked out.

Thanks so much. That is what it looks like. I have often wondered if I had dermatomyositis as I have a horrible red rash on my face. This seems to be something that I need to look into. What type of dr is recommended for diagnosis of any of these disorders? A rheumatologist or dermatologist?

Does the rash on your face go beneath your eyes and over your nose, like these images show? If so it is called a malar rash and is one of the things rheumatologists look for in dx lupus.

My rheumy dx'd my livedico which is another condition that can happen with lupus or can indicate antiphosolipid syndrome, also known as Hughes Syndrome.

Take pictures and make an appointment with a rheumatologist. Auto-immune stuff will not cooperate with our MDs schedule and the rash won't necessarily be there to show the doc.

I'm so glad you brought this up. In the past month or so, I've been having pain in the middle knuckles of my hand - the right one especially. In the last two weeks, it's become almost unbearable and I can hardly pick up a coffee mug and any sideways motions involving those muscles sends shooting pains through them. Anyone else? I guess I need to see a rheumatologist...The knuckles of my right hand are swollen and the middle knuckle on my little finger is all red and bumpy.

Anyone? Help?

Cheers,

Jana

Oh, sorry....what's the ANA test?

ANA is anti-nucclear antibody test used for screening for lupus and autoimmune disease. You do need to see a rheumatologist and it sounds like you get to join those of us regularly getting a couple dozen blood tests. Please make an appointment as soon as you can - if it is RA or lupus, the pain you feel now is nothing to a full blown flare.

Hope it is nothing and is miraculously gone by morning (giving you enough time to get a rheumy appt)

. My legs were really hot feeling and it looked like blood pooling at the top of my skin in weird patterns. It went away after about 15 min, but this is really weird. Has anyone else had something like this happen? Any ideas on what is going on? I hope this doesn't mean I can't go in the sun at all anymore. FYI I have a medium to dark olive complexion, not fair.

Thanks to anyone that can give me ideas on what is going on. It freaked me out.

The pattern you mention made me think of livedico reticularis. Mine is usually more prominent in cold weather.

Check out the images on the link and see how it corresponds to what is going on. The site is very good for skin conditions.

Hello Mary-

I am glad you health has improved to the point that you are able to participate in the forums. I also have Raynaud's and struggle with migraines - I haven't been able to read a novel in 2 years which is absolute torture for me.

Welcome

noreen

I cannot tolerate compression stockings due to the neuropathy in my feet - with the burning and pain I just can't have stockings on or even socks for any length of time.

I ran across these and was wondering what you all thought. Would these running leg sleeves offer the compression we are after? with only a few brain cells waving forlornly at each other, I am unable to determine whether iI would still have pooling in my feet or if the compression of the lower legs would be enough to decrease it.

thoughts?

(I was depressed that I couldn't watch the local triathalon - tried to drive there but couldn't park and get out of the car - horrible weather, no energy - but I got to see pretty leg sleeves!)

Geez, I've been researching this further & farm-raised salmon from the US, Canda & Chile has been implicated. We eat this at least 3 times a week. Yikes. I also recall becoming severely ill following a meal of sword fish when I was pregnant with Mack. He also fell in love with barracuda while in Aruba. I'm trying to remember if that's before or after he got sick. Might be something to this.....

I would worry much more about mercury and pcb poisoning from farm raised salmon. My Environmental Health professor authored the study showing farm raised salmon were fed mercury laden feed. He urged us all to do fish oil supplements as these are tested - of course he was most concerned about females in child bearing years.

With all the garbage dysautonomia throws at us we honestly would not know if we had mercury poisoning - it would just be more of the same old same old. My new neuro insisted on running the full heavy metal panel given my symptoms and specified that I was to be off ALL fish, including my allegedly mercury free fish oil capsules, for 10 days prior to the test.

I don't see it as a cause of POTS but the potential problem I see is that it could be contracted by any of us and the symptoms would blend into our usual and not raise any red flags - that would set us up for additional chronic problems.

I now need a threshold ramp once I land onto my very small porch. the rise is about 5 1/2" any recommendations? I'm going to stop searching the net and see if I get some help for my favorite place. Thanks in advance.

bellamia~*

bella-

I was going to recommend this ramp

http://www.discountramps.com/threshold-ramp.htm

and then noticed it is on back order until August. However, that is not all that far off now.

In the meantime, here's a great low cost version with duct tape. the story has to do with making your own curb ramp that is light enough to carry but the theory might work for a while.

duct tape ramp

I ran across this scooter and since it is vacation season for some, I thought I would share. It is beyond my budget but it looks fabulous for conserving energy and being able to sit.

Travel Scooter

Some of the testimonials speak of teenagers trying to get parents to buy one after seeing this scooter. So perhaps this is the 'cool' mobility device some forum members were looking for a few months back. No stigma with this mobility device!

I am so glad your daughter has you to look out for her well-being. It certainly sounds like you are approaching this in a highly systematic fashion.

Your charting is undoubtedly helping the medical professionals see the forest from the trees with your daughter's condition. Aside from her menstural cycle what other factors are you able to incorporate in your chart to share with the docs?

prayers and positive energy for healing -

noreen

{{{jennifer}}}

so sorry you are having a rough time at the hands of the medical profession. Horrible aspect of this stuff is hating to see doctors.

I so totally get your anger. My cardio really doesn't want to deal with me either - no structural problem, no interest.

hope something works out,

noreen

Wonderful that you were able to go and hug your mom. Very courageous of you but well thought out 'just in case' so you are to be commended for that also.

Super news that she is on the mend. Hopefully you will rest easier now knowing in your heart she is getting better.

{{hugs}}

noreen

Hope you are feeling better.

Given the reports, I would try again when I had a week to ten days clear to allow your body to adjust. I hope it works for you but I know it generally will take 6 months to know. LDN did recently get approval for study under NIH.

You've probably seen this e-book with patient stories but just in case. LDN has also been used as a topical prep, apparently with good results, and that modality might be worth looking into if you can't tolerate the pills.

best of luck

Unfortunately, you are at the top of the knowledge threshold with your specific ANS dysfunction.

I can't tell you how many times I've heard: " well, it isn't normal for anyone else, but it MUST be normal for you......."

At least that is an honest response.

Being given an answer that it is anxiety or another dx rather than listening to the patient and validating her concerns and experiences is half baked medicine at best. Especially at they are not giving her treatment options.

[quote name='Angelika_23' date='Jun 7 2010, 12:08 PM' post='140947

Angela

I use a forearm crutch instead of a cane. I feel this gives more stability, the cuff at the top allows you to open your hand without losing the mobility aid. When things are really bad or if I have to walk a long way carrying something (e.g. medical facilities) I am apt to use my seated walker because you never know how you will feel as you make your way back. I fight to use the cane as much as possible as part of exercising and find it does help. I am not sure whether a regular cane would give me enough of a feeling of security . I use the Walk Easy crutches and find that they are easiest for shock recoil.

noreen