Rls somtimes or all the time

For everything and anything else not covered in the other RLS sections.
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jrowley
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Post by jrowley »

Well I meet the "criteria" of rls:
Yes uncomforable sensations
Yes at rest, while sitting laying ect...
Yes more at night
Yes goes away withth movement hence having to move all the time during the day because i sit most of the day so therefore it acts up all day.

Sleep test yes movement while sleeping showed to be every 6mins. Opps I read back and I guess i miss communicated it wrong my test did show the jerks thats how the doctor knew I jerked every 6 mins sorry for that, but my doctor just said I had severe rls and did not include plmd. Why the doctor did not include it I dont know but he was not a neurolist so that may be why however my neuro is not saying that either. As for the neuropathy that is one of the things the emg test is for and yes I did have blood work for it along with lupas, arthritus, diabetes, iron, and for metalic or mold ect.. I also had a vasular test to verify the proper amout of blood was flowing through my veins and was good. I also had a cardolite stess test done. All these test came out perfect my family doctor said they couldn't have been any more perfect. So there are no underlying problems causing it. And I would have to say, whether the sleep doc or my neuro say, that I have plmd since my sleep test showed the jerking and my hubby says i jerk.

So yeah I guess maybe I am much different than most thats why I have asked the question and am trying to get how other 24/7 ppl are affected by their rls/plmd. I know numbness is not suppose to be a part of it but obviously it is for me since my emg and my vascular test were good. Trust me Ann I have been everywhere with this and researched everything from all the underlying conditions to the california site to the yahoo sites to here, everything plus been tested for it. So you can see my confusion and my struggles.

My rheumy sent me for the vascular test because of the numbness and because my feet and hands were so cold. All was good. She also did a complete blood workup for all the auto-immune diseases, everything fine, but thats not to say I don't have one as that is a hard disease to dx.

My neuro did the emg it was good. Have you ever had a emg done. It is about the most painful test in the world they shock your nerves and poke needles into them after they shock them. All of these test have taken place since Jan. And your right I didnt sleep well on my study but I must have slept enough for it to record the jerks every 6mins. Arggggggggggg :evil:

I am sick of this and so sick of the test yet nothing has helped. Anyhoo I guess I will move on and deal with it. There are no answers anymore. I have come to my last hope of anyone having a simular situation. I've looked everywhere. :cry:
Jan :roll: Can't wait to sleep!

sardsy75
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Post by sardsy75 »

USED TO BE A POST HERE TOO
Last edited by sardsy75 on Wed Aug 10, 2005 12:13 pm, edited 1 time in total.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

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jrowley
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Post by jrowley »

That could be but there are blood test that can be done to verify that and the rhuemy did those test as I said she did a complete i mean complete bood workup and checked for all the auto immunes. I thought the same thing that was why I went to her in the first place but nothing came out of the blood work. Sorry clean bill on that one. I have rls thats a fact to what extent and what level of medication I will take is unknown. All I wanted to know was if someone had a simular case as mine and if so what is it like and how are you being treated. Is that to much to ask I feel like I am on trial for having rls and wanting to know if anyone else is in the same boat I am as far as finding the right comibnations of meds. I already told everyone that I was tested for everything that your are mentioning but yet I feel as if you dont believe me when I said I was. I dont get it I guess I will move on this is nuts. My doctors have already given me a dx now its finding the meds and I just wanted to know if anyone had 24/7 with pain and what or how are they being treated. Then I could compare or maybe there are much stronger meds out there that I should be trying. We already know if mirapex and neurontin doesnt work then it probably is pretty likely that requip wont work unless it is given with a combination of drugs. Ok so what kinds of combos are ppl taking that are in severe case such as mine.
Jan :roll: Can't wait to sleep!

jan3213
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Hey Jan

Post by jan3213 »

It'a Jan 3213

I hear a tone of desperation in your voice that sounds SO familiar! I haven't been in on this thread for long, but I want you to know that I understand what it's like to feel that no one BELIEVES YOU! I've BEEN THERE! In fact, just a few paragraphs ago, when I mentioned that I had 11 movements in a minute, I'm not sure THAT I WAS BELIEVED, but that's what my sleep doctor said the report stated!

I, too, have been tested for lupus, RA--in fact, one day, I had 8 vials of blood taken from me. I have had RLS most of my life, but I DO have SOMETHING else. Last fall, my neurologist "dxed" me with fibro (didn't do the "points" test--just threw that dx out when I "compalined" of pain in my joints, stiffness when I awoke in the morning, among other things.

Then, I was sick all winter--caught everything under the sun. I sarted feeling like a hypochondriac. I couldn't "get over" anything. And, my RLS was worse than ever. Just ask Becat, or some of the other members here. They'll tell you how sick I've been. Finally, this spring, a new neuro, finally, I THOUGHT, hit upon what might be wrong with me: rheumatoid arthritis. Now, I'm not so sure. I have an appointment with a rheumy on September 20.

I was even afraid to call my doctor for an appointment. I just had a bout with kidney stones and, frankly, I don't think she believed I had a problem until I called her, screaming into the phone. So, PLEASE, I undestand!

Everyone IS DIFFERENT. It's so hard for us to give you a definitive answer. We're not trying to be mean or indifferent. Honestly. Please don't give up. RLS is horrible and it can drive you insane. But we are not doctors. We can only share our experiences with you. Please take care AND DON'T GIVE UP!

Jan 3213
No one is alone who had friends.

ViewsAskew
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Post by ViewsAskew »

Jan, you seem to have three components that need to be treated: jerking while awake and sleeping, uncomfortable sensations, and pain. I would think that any solution would need to address all three. I am not a doctor, though, and make no claims that this is anything but a guess based on the little knowledge I have learned while researching this to help myself.

From other conversations we've had, I know you don't like the thought but a strong opioid is one of your best options for the pain and sensations. It does not have to be methadone. It is the treatment used for refractory RLS by the algorithm. You can go on drug holidays from it. You can try Ultram first, which is a not an opioid but works similarly. It helps pain, helps RLS, and doesn't make you sleepy so can be uses during the day. Best of all it is not an opioid and may have even less problems with any type of physical tolerance or addiction.

But you still need something for the jerking and an opioid will not help. In terms of Requip and Mirapex, many people do find that one works when the other doesn't. Requip didn't work at all for me and I was at a dose 7 or 8 times higher than the dose of Mirapex that did work. Mirapex caused too many other problems, though. So Requip still may be worth trying.

In a conversation I had with Dr Buchfurer recently about my PLMD, he said that in many cases if it is used with other drugs, a small amount is all that is needed to handle PLMD with Requip or Mirapex. I was resisting because of my bad experience wiht it, but since my RLS is completely under control, he felt I might find that 1/2 or even a 1/4 of a .125 mg pill of Mirapex would work since it helped me in the past. I also have slides from the last RLS conference from Dr Rye's presentation (I think it was him) and some of them show the effect of Requip on PLMD. In the most severe cases it almost completely stopped them. I would have to find them or look at the link from this site, but I don't think the doses were that high.

The only other drugs that are known to help PLMD according to Dr Anderson (looked at one of the links we have on here) are Klonopin (which made you too sleepy), neurontin (which didn't help), carbidopa/levidopa (which worsens RLS in 70-90% of cases - depends on which research you read), baclofen and gabitril.

Even though the neurontin didn't help me when I took only that, it is one of the most commonly used drugs to 'add' to a cocktail. It does help me when I use it inconjunction with the opioids in order to control the PLMD. It makes me very drugged the next day, however, so I'm considering asking the doctor to let me try baclofen or gabitril to see what happens.

Ann

becat
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Hi Jan and Jan

Post by becat »

Hi to you both Jans,
Jan #2 or Jrow.........I take a least one Percodan a day. I get to spilt it up how I need it. I have a buffer of pills because pain and pain meds have a certain variable to them. I also take Ambien 15 mg at night.

Add the non-pharm stuff I do.
Caffiene, none after noon if I can, but non after 6 pm at all.
I take cal/mag in a liquid form
I need to add a good multi vitamin but wil wait til my schedule calms down.
I was taking iron but stopped because of my schedule this summer. You need alot of fiber between pain meds and iron.
I walk 1 1/2 miles every night.

JanR.........I doubt that anyone here would want you to feel uncomfortable. We ask questions to be able to give good answers. Our intentions were good. Please know that. I'm sorry if I made you feel uncomfortable and may I send a well deserved ((((((Hug)))))) your way.

cornelia

Post by cornelia »

Well, Jan, I am a bit late mentioning that I have 24/7 RLS too. I have been a bit depressed lately and I was not in the mood to answer your post, but am now.
I am on 1mg Requip and 1200mg Neurontin at night and 50mg Tramadol in daytime. When I wake up I am in a lot of pain and stiff. I know it's from the Requip. A hot shower and the Tramadol takes care of that. I still have RLS and PLMW and agree with Ann that opioids don't work for PLMD/W, hence the cocktail of a DA, an anticonvulsant and a painkiller.
I agree fully with others that it is best to follow the RLS Algorithm.
There is no cure and we have to make-do with whatever meds there are and a good relationship with a neuro who is up to date with RLS is of the utmost importance, especially that we have to change meds from time to time when they are not working anymore and we need a drug holiday.
I just read an extract of a research-article on meds for RLS. Nothing new, but hopeful. It says that several promising new therapies with nondopamine profiles are under development.

So Jan, I'm probably not helping you with this post. But we are all partners in suffering with this burdening disorder.
The fact that many people answered your post show that they care for you. Not mock at you (I'm from Europe, so I don't know if this is the right word).

Researchers are working on this thing. Not fast enough for us, I know. But they still do and I am sure that they will find better meds to deal with the problem.

Take care, Corrie

sardsy75
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The Replacement Post

Post by sardsy75 »

I’m in a rather blunt, Aussie-kinda mood, so I’m just going to say it all straight out …

Trust me Ann I have been everywhere with this and researched everything from all the underlying conditions to the california site to the yahoo sites to here, everything plus been tested for it.


I am sick of this and so sick of the test yet nothing has helped. Anyhoo I guess I will move on and deal with it. There are no answers anymore. I have come to my last hope of anyone having a simular situation. I've looked everywhere.


Jan Rowley … exactly why did you come to us when you’ve been everywhere else and not found what you wanted?

We are, apparently your last resort … which we really don’t mind … as we really do care about people who want to find a resolution to their problem instead of continuing along a downward spiral into RLS oblivion. However, at no time in any of the posts you received in reply did anyone intend to offend you, mock you or even worse, DISBELIEVE YOU!!!!

Everyone who has responded to you … has gone out of their way to give you advice … share their own life experiences … offer solutions & directions to head in & questions to re-ask your doc/s … heck even do some research for you … only to have it questioned again and again and again. So, I decided to take back everything I’ve said on your thread … literally.

I was under impression that everyone has rls all the time and not periodicaly and unless medicated and when not medicated the rls is back. From what I have read once gotten you never get rid of (unless its secondary rls caused by meds or illness ect..) you only treat symptoms of. My neuro said the same and that is why it is so difficult to find the right med or combination of meds to work as the symptoms are different with everyone.


#1 Thought to Ponder – There is no cure! Only relief and management (long term for some, not so long for others). Yes, we have members on this board who claim they’ve been “cured”, but they’re the lucky ones who’ve managed to find a remedy/cocktail that alleviates/relieves their symptoms to the point that they actually feel like they’re cured.

#2 Thought to Ponder – RLS although “diagnosed” by neuros/gp’s/sleep doctors around the world using the same four questions, is an extremely INDIVIDUAL syndrome. I’m yet to see any two RLS’ers who have EXACTLY the same symptoms, let alone the same remedies/cocktails. You will also find that in nearly all cases, patients also have a myriad of other medical problems to deal with as well … just as you do (and what do you know … so do I!). So for us all to be on the same drug at the same dose is simply impossible. We are our own guinea pigs so to speak until we hit that magic potion. We’ve all had our various tests done by various neurologists/sleep doctors and been told what we think we want to hear, but it sometimes turns out to be the total opposite. Hell I can’t even figure out if my neuro still exists at the moment … he’s not responding to either my phone calls/emails or ones from my GP … so I’m in a real pickle!

#3 Thought to Ponder – The Algorithm for RLS Management outlines three separate types of RLS … which points to different levels of symptoms, different types of symptoms and even different TIMES of symptoms. It also gives extremely useful information on which drugs to start with for each level of RLS. If one type/family of drug doesn’t work, it may work in combination with another, or you may need to switch to something entirely different. As I said above … we are our own guinea pigs in this quest for relief.

#4 Thought to Ponder – This group is a Family who have come together to find a way to make the medical community more aware of what RLS is and how it affects us each and every day. We don’t hang around here posting just for the heck of it … we want answers too, just like you. We have worked hard in this group to research this syndrome in numerous ways – keeping individual online “diaries” amongst the threads; writing quality of life statements; sharing our symptoms; comparing our drugs and our individual reactions to them (e.g. for some Neurontin is “THE Cure” yet, for me one Neruontin tablet has me bouncing off the walls with hallucinations for hours … I, a 24/7 primary familial refractory rls’er, can tolerate tricyclic anti-d’s, yet nearly everyone else can’t, go figure). We share quirky non-drug ideas that work when everything is going completely ass-about for us (I still think the "Black & Decker" Method would have to be the most creative!). This group is here to fight for RLS to be recognised and researched.

#5 Thought to Ponder – You can thank a chat buddy of mine for prompting this final thought (and since I’m also in a rather tipsy and depressed mood) …

I am sick of this and so sick of the test yet nothing has helped. Anyhoo I guess I will move on and deal with it. There are no answers anymore. I have come to my last hope of anyone having a simular situation. I've looked everywhere.


Have you really come to the conclusion that there is no hope for you anymore? Have you come to an absolute realisation that there is really no hope for you? Have you hit such a dark place that you don’t know where the light is anymore?
There are more chronic/severe/24-7 fellow rls’ers here than you think. We have ALL been where you are now. We ALL know what you are going through. We ALL care about what you are feeling. Don’t discount the mild and moderate sufferers though … they too live to find their own solutions and count their blessings that they’re not in our shoes. We are ALL sick and tired of being "sick and tired". To be 100% healthy is but a dream for us ... so we have to work with what we've got and use the resources we find.
Open yourself up to a little bit of help … even if it is from complete strangers who live at opposite ends of the world. We all have this disgusting, frustrating, debilitating syndrome and we’ve all had to find a way to deal with it. We’ve come together in this forum for support. Some every day … others when they’re just going through a bad patch. There are people here who DO have things in common with you, so take on board what they have to offer and work with it.

WE DO CARE!!! Let us help you!!!

You asked about what kind of drugs/cocktails/regimes other 24/7’s have tried … to list the crap I’ve been on would take too long … so I’ll just point you in the direction of my “online saga” at http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=37 which you can wander through at your own leisure.

My motto … which keeps me going each day … is “Take it one step at a time … one day at a time … and most importantly STAY POSITIVE!!!”.

Now that’s out of my system, I’m going to bed.
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

Sara
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Post by Sara »

Hmmm...

I wonder if we don't all need to lighten up a bit.

We are INDEED all suffering from fatigue, frustration, discomfort... and many of us on meds, with effects from those as well.

And for that VERY reason, I think we need to try not to take things quite so personally.

My $.02.

Sara :D

cornelia

Post by cornelia »

Sara, you are such a dear.
But sometimes it can be a GOOD thing that we get " told off". It is not nice, but it can wake us up and let us see our shortcomings and get the picture. After all, we were trying to be helpful.
So I do understand Nadia and can chime in.
I can also understand Jan, who is desperately seeking adequate help, which is hard to get by for many of us.

Well, no more.

Corrie

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jrowley
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Post by jrowley »

Well never mind I dont want your help I asked a very simple ? and the only thing that happened was I got told what is wrong with me and that my doctors could be wrong about me having rls. I felt like I had to prove to you that I had. There were about 4 ppl that replied in this post to the actual ? that I asked rather than to tell me we are all the same and that I might has this or that. So I guess I'm sorry for trying to get my ? answered, which was how many ppl are 24/7 with pain and what types of treatments you had and if they worked or not. I didn't aske for anyone to evaluate my symptoms nor try to tell me what I have especially tell me after I just posted that I had already been tested for it and I was fine. So whatever. See ya
Jan :roll: Can't wait to sleep!

cornelia

Post by cornelia »

Well, that finishes it, I hope.

Corrie

sardsy75
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Post by sardsy75 »

If anyone is still chasing information on these boards regarding 24/7RLS & pain, then the following threads may be useful:

http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=692

http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=751

http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=528

http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=45

This next link is to the "New Members & Current Members Please Help" where members have pretty much listed their symptoms along with their meds and any/every other ailment they are living with. Quite an interesting read.

http://beta.restlesslegs.org/phpBB2/viewtopic.php?t=192


At the request of a fellow RLS'er I am reposting the posts I removed earlier.


sardsy75 wrote:
Posted: Tue Aug 09, 2005 9:58 am Post subject:

Hi Jan

'Nother 24/7 primary, familial, refractory RLS'er here. In here, you can compare symptoms, the frustration, the anger, the sleepless nites, etc, but RLS is such an individual "syndrome" its almost impossible to compare people when it comes to treatments. I must admit that as one of the first members of this board, I have been neglecting my fellow rls'ers of late ... but that is mainly due to family situation. I could spend hours and hours every day reading every topic in here and finding a way to respond to it, or just offer a comforting "ear".

Like I said, primary ... so I've had it all my life (since I was born according to my parents).

Familial ... at least 3 people in each generation on my mother's side, including my mother (who has fibro, CFS/ME & is almost totally immuno-deficient).

Refractory ... well ... that's the 24/7 bit that I really hate. I can remember as a child having "really tired legs" all day and night for days on end, yet there was nothing anyone could do about it. As Ann mentioned in another post recently, some ppl experience a kind of "remission" from their RLS at some stages of their lives, well, my RLS did just that from when I was about 17 until I hit 27. Then it was on for young and old, literally!

Both arms, both legs and hips all at once, 24/7. I was started on Cabergoline and hit a massive 5mg ... this worked for about 6 months b4 starting to lose it's effectiveness, and a major side-effect kicked in. So reduced the Cabergoline and added Carbidopa/Levodopa to the mix ... and then the fun REALLY started!

I would have to say that last year was the most hellish year of my entire life when it comes to my RLS. Trying to find a "cocktail" of DA's/Anti-Epileptics/Anti-Depressants/Sedatives/Painkillers/etc/etc/etc literally drove me right to the very edge of wanting to end it all more than once. It's pretty scary actually finding yourself going out of your mind, calculating just how many of each drug you have in your drawer it would take to end all this disgusting frustration!

I'd have a number of days in a row where i'd be "symptom free" then a whole string of days when i'd be literally yelling for a chainsaw. A see-saw of frustration. You could say that i'm still like that now, but only to a very mild degree ... days on end when I have extremely mild sensations or very "tired" legs, then go for weeks without any problems whatsoever.

At the moment I am "under control" with quite a bit of success, with a daily combination of:

200mg -amantadine ("symmetrel") - antiparkinson
60mg - codeine ("panadeine forte") - painkiller
2mg - clonazepam ("rivotril") - sedative
25mg - amitriptyline ("endep") - antidepressant
2.25g - valerian - herbal muscle relaxant

Now, I said that i am "under control" ... that doesn't mean that all my symptoms are gone. I have days (and that's daylight hours, not nighttime hours) where I can "feel" my legs the entire day, but it's mild enough for me to not have to stop what i'm doing. I can tell you 12-24hrs in advance of when it's going to rain because my legs go completely nuts and no amount of drugs will stop them. I recently had a drug "holiday" from the amantadine as I found that over a period of more than a week, my legs were bugging me more and more, earlier and earlire ... so i switched back to the trusty cabergoline (1mg) for about 3 weeks then went back to the symmetrel. Bingo, "problem" solved.

I can tell you that it's 10am Tuesday ... and as i sit here typing, i'm finding ways of stretching my legs to get rid of the annoying "feelings" in my hamstrings and calf muscles (even tho we all know it's not the poor old muscles!).

OK, methinks I'll shuddup right about there lol. Short posts are most definitely NOT my forte`!


sardsy75 wrote:
Posted: Wed Aug 10, 2005 12:26 am Post subject:

Hi again

Forgot to mention in my earlier post that I have pure 100% RLS ... no PLMD.

My hubby was grilled and grilled by my gp and every neuro & sleep doctor that i've seen about whether or not i "move" when i sleep. I don't. When i finally fall asleep, i'm like a solid rock. It's funny that the sleep doc I saw back in January thought that it was quite "atypical" of someone with severe refractory RLS to NOT have PLMD, but hey, someone has to buck the trend!!

The second neuro I saw (early last year) diagnosed me with Chronic Fatigue ... but I actually beg to differ. I may have a very mild form of it, but nothing anywhere near to the extent that my mum or someone like Jan (3123) has. I know my limits when i'm out and about ... learnt them the hard way by trial and error.

Take care!


sardsy75 wrote:
Posted: Wed Aug 10, 2005 12:42 am Post subject:

Wow!

Sara ... I think u are the only other person on this board that has actually said they don't have some form of PLMD!

I think it says somewhere in all the medical literature that about 20% of all RLS patients DONT experience PLMD ... guess that's us!

:D



sardsy75 wrote:
Posted: Wed Aug 10, 2005 9:01 am Post subject:

Hi Jan

jrowley wrote:My rheumy sent me for the vascular test because of the numbness and because my feet and hands were so cold. All was good. She also did a complete blood workup for all the auto-immune diseases, everything fine, but thats not to say I don't have one as that is a hard disease to dx.


[color=indigo] Cold hands and cold feet huh?! Don't suppose you find on a cold day or when you're in the freezer aisle at the supermarket that not only your hands and feet are cold but your nose and ears as well?

You might just find that you have good old Reynaud's Phenomenon; a quite common circulatory system disorder that affects the extremities e.g. hands and feet.

http://www.raynauds.org


If your fingertips, toes, nose and even earlobes become painful when temperatures drop to frigid levels, you might be suffering from Raynaud's phenomenon.

If holding an iced drink causes your fingers to turn blue (or white), you are probably one of an estimated 28 million people in the US alone who have Raynaud's phenomenon.

If air conditioned rooms -- or putting your hands in the freezer -- cause your toes and fingers to hurt, you might be experiencing a Raynaud's spasm.


I have Reynaud's ... and for 90% of the time my hands and feet are like ice. My feet are particularly bad at the moment due to it being winter. I'm lucky if I can feel them, but i know they're still there 'coz they're still holding me upright ;)

If i go walking in the late afternoon and there is the slightest hint of a cool breeze i will come home with ears so cold sore and aching that it's like having a migraine.

Check the rayaud's site out. Hopefully it will point you in the right direction.

Take care!
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

ksxroads
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Location: Kansas

Post by ksxroads »

Trying to keep a diary to take to the neurologist. So looking for info on daily symptoms to see if mine apply ... so will take time to read through the links sardsy posted. Thanks for making my search easier.

Thought I'd make a comment - a couple years ago I checked into the Reynaud's as I have problems time to time with my hands and feet turning ice cold. However, it usually happened when it was 110 in the shade. Being outside during the winter, I do not have the pain or problems that a person with Reynaud's syndrome experiences. Dr did tests which indicated it wasn't circulatory, then again he diagnosed my tail fungus as ingrown toe nail. I left his practice a while back. I thought it might be related to allergy as it usually happens outside during the summer... who knows. It hasn't killed me so far...

I'm just glad you tolerate my ignorance and answer my questions!

With your help and finding the right medical personnel, hopefully I can regain some of my confidence, my strength, and ride horses, hike and take photos with my husband without fear or pain.

Hazel whose mind is somewhat less cloudy this day.

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