NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - what is this! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/22005-what-is-this.html)

i went in for my MRI today and i was early. like 2 days early. i swear... my angel was watching over me because they had a cancellation and i was able to get in.
now, here's what's weird. when they got done scanning my spine, the nurse came in and asked me if i had been in an accident. and i said no. she said "you're sure you didn't throw out your back or anything?" i just told her that i got hurt all the time because i am a sportie. but why did she ask me that?????
thennn - when they were scanning my brain, they had this mirrored thing on it so that i could look out instead of up and they were pointing at the computer and one girl picked up the phone and walked out of eyesight. then the other lady looked again and slowly nodded her head. so i'm like WTF is going on?
when they came in and said i was done i said they scared me and she just looked at me. and i said, "you're not going to tell me are you?" and she said "nope, but if i thought it was urgent we wouldn't let you leave..."

i can't stand that because now i'm going to awfulize until i get the results.

i'm sad to say, though. i only had 1 brain instead of 2 like i thought. bummer.

:grouphug:

Quote:

Originally Posted by unrouley1 (Post 117292)

Ang, Ang, Ang!! The nurses asked me so many questions too, when I had my MRI of my head and spine. It may be nothing. "worrying is like a rocking chair.. it gets'you no where" It's true, if they did find something "Urgent" they would NOT let you leave. They would have to call your Doc. Besides, the techs. don't know how to read these! It's the Radiologists, doc's, etc. that read these. now, quit worrying my friend and get you some :Zzzz: Love, Desi :hug:

Hey girl - hold on here - you haven't "done" anything! you had a great, wonderful day, and even shook your bootie! And you sweated - and grabbed some ice. This sounds extremely normal, and happy, to me.
Your hand's reaction to the ice sounds like you might have, um, RSD? DEEP BREATH. You're in the right place. You are still a mom to 3 beautiful children. And you got all that miserable MRI stuff taken care of already. Stick to your plans: your vacation, your appointments, etc. And if your pain is back? Call your doctor and get a new pain prescription. Don't suffer needlessly. HUGE HUG.

thanks molly. i just didn't know that would ever happen.

i didn't have any pain pills, but i took a valium and slept last night. i feel groggy this morning but my hand isn't as bad. it's just stingy.

i'm sorry for overreacting. i just thought that maybe i was the one that wouldn't have continued problems. i guess i forgot about the muscle spasms and the eye jiggling and the hand and feet numbness. whatever.

so i have vowed to never pick up ice with my hands again. i don't even like the stuff anyway. i always drink lukewarm everything. even pop.

i do want to ask this. whenever you guys get shivery, like stepping into a cold pool, does your body like freak out? i don't just get goosebumps, my body actually hurts. it feels like my whole body burns. is that typical?

My dear Angie...

Quote:

Originally Posted by unrouley1 (Post 117926)

i do want to ask this. whenever you guys get shivery, like stepping into a cold pool, does your body like freak out? i don't just get goosebumps, my body actually hurts. it feels like my whole body burns. is that typical?

My body has been doing that a bunch, Angie! All of a sudden a shiver runs down my spine and I get goosebumps ALL OVER (like almost my entire body)... I have "heard" that it comes from RSD??

My body freaks and it HURTS! A lot of the time my skin is ICE COLD but I have no goose bumps. Then other times it isn't that cold and I get goosebumps. Apparently it doesn't have to do with the temperature of your skin.

I find it strange that it's 90- 95 degrees where I live yet my body is ICE COLD and never warms up like it's surroundings, though anything (like water, books, lotions) else warms up from the surrounding temperature... :confused: :confused:

Strange, but I know what you mean, and hang in there sweetie!! I know how it feels... :hug: :hug:

Hi Ang! I too know what your going through! My hand, arm, wrist..are so cold! heck I get cold chills, goose bumps all over. Ang, my hand, wrist are blue, red, then back and forth. blue, red.. purple too.. heck.. rainbow:winky: My shoulder feels like someone is picking away at me with an ice pick,then feels like someone is putting their hot cigarette out on my shoulder.. ouch!:eek: my arm, wrist, hand, shoulder, too feels so painful, that I am now getting use to this pain. I took a morphine pill and I still hurt on and off like crazy. We love ya here, Angie.. we care.. we understand... we are all "GREATFUL" for one another whom I choose to call "My friends"! Love ya my friend! :hug: Desi

OK Angie,

I have a very bad flare of all my conditions at once, both arms in hell, typing too painful; still, had to say this.

I feel we've really come full circle with you Angie.

Go back to the start of this thread and read it again, the whole thing, right through.

Don't you see a pattern in your posts?

Your strenuous exercising may please you (and perhaps a couple of other posters) but according to your pattern it does not seem beneficial. Moderation may get you further, adapting to a regime of exercise broken by frequent rests.

One other thing. A small amount of sunshine is good, gives you lots of vitamin D. But beyond perhaps 20 mins tops, RSD limbs don't like it. For myself, the idea of putting my RSD and RSI arms in hot sun is anathema, simply unthinkable. If you can do it, and the extremely long sport sessions, perhaps you should get a second opinion. Stamina is unfortunately one of the first things to give way with RSD, sadly.

Please try to start helping yourself more. I think the people on this forum have offered you wonderful help and advice, it's time you helped yourself. Reading the forum from the back end forward would be a start and might give you some insight.

By caring for yourself, you're caring for your family too.

I don't want to encourage you further in a cycle or pattern that seems to me to be potentially harmful and getting you nowhere.

all the best :)

i thank everyone for their advice. i have compassion as well and not all of my posts have been about myself. however, i am extremely offended, artist. i'm sorry if i haven't heeded everyone's advice and maybe i haven't done what i am "supposed" to do, but i thought that that was what this forum was about. i am scared. i have no one here that understands what i am going thru. why is it wrong that i write my fears and what is going on and ask questions?

how am i supposed to know EVERYTHING!!!

my illness is at a different degree than every single person on this forum. i don't minimize ANYONE'S pain or suffering. i have NEVER done that and i never would, but thank you for making me feel that way.

You get sick, cry in corners, come here and whinge, then ignore advice given, have an extremely prolonged exercise orgy and promptly put yourself back at square one by severely overdoing it. Then you get sick, and cry, and whinge and....etc etc...

if what you are trying to do is hurt my feelings, you've done it. thank you artist. i have 96 posts. you have almost 900. so if it takes me 900 posts to be so wise as you - i give up. thank you for turning me away. and you know NOTHING about my husband so don't make assumptions.

to everyone else, i truly apologize if i have offended you in any way. it was never my intention. ever. and i apologize to you, artist that i have been so insensitive in your eyes. but i feel that if you want to say these hurtful things for everyone to read instead of PMing me, then i offer you the same courtesy.

shalom

Hi Angie,

My opinion is just that: just my opinion. Most others will have a different one. I felt you should know why I won't be joining any more sessions trying to help in offering you advice, but I'm sure plenty of others will. Please take some advice from my previous post, though, start to read about how others deal with this condition and try to start applying as much as you can to yourself where applicable.

I did not, btw, mention compassion or say that all of your posts have been about yourself.

You have as much right as everyone else to scream and shout, of course, and whinge, we all do it, me too, and I am sorry your feelings are hurt. I've said as much as I want to, Angie, I just hope the "Spoons Theory" starts to mean something to you soon :).

All the best.

Hey guys-
:(
I haven't read thru all of this thread but if and when there is a disagreement or certain feelings that you feel you need to air -
please do that via PM - that is one of many things that they are for.

I'm also asking that some self editing be done so as not to upset the whole group.

Thank you in advance

If any questions PM me , kimmydawn or any of the mods

You know when I went on the TOS forum back around 98, I was in the same shape that you are in. I had something going on and was desperate to find answers. One person that comes here might remember what I went through and how one person treated me. It was the braintalk forum by the way.

After going through 11 years of getting all of the tumors out of me and going through 5 years of test my Dr. made me go through to make sure I was cancer free. He called me after the last test and told me that we were cancerfree and when I went in to his appointment he hugged me and said that I was on the road to getting well and doing what I wanted to do.

I woke up one morning and couldn't get out of bed because of my back and ended up on Vallium and Hydrocodone. We didn't know I was allergic to it and I got out of bed but I fell several times and ended up with TOS.

I found the TOS sight and I was you, I didn't know I had TOS but I had several Drs. trying to diagnose me and none could. That's when I went looking on the computer for the diagnoses I needed. I figured it out by talking to people on the forum and stayed on there for several years. After I had my TOS surgery, I ended up with RSD and I stayed here to learn and help others.

Back to what I was saying, I had one person on that forum that was horrible to me, she soon left but not on her own.

I sounded just like you as I said, I was in so much pain, I was desperate for help to find answers. I got them and finally after getting some of my diagnoses here I was able to relax and get the help I needed by finding the right Drs.

You belong here. What you are trying to do is find what is going on with you and help get the answers you need. Each and everyone of us have been through a lot with RSD and it's very hard to get through it without the support we need. I do have a great support system here but I still want to be around people that have what I have so I know I'm not alone.

Stay here and continue trying to learn what you need to find out. Don't let what other people say effect your mission to get the help you need. We are all on here for the help and support that you are wanting.

In my councelling I have learned to let people say what they want to say and then move on. Don't let other people try to bring you down. Please stay and learn. You are wanted here.

Ada

Artist,

I have crps type II cold. I ADORE the sun! If it's not very warm out, then I am stuck having to wear wool socks and a sweat suit. Being purple hurts.

It took several years before I lost all my stamina. For the first few, I kept right on truckin' on, hoping if I denied the crps power over me, that I might just win. Yes, I was fooling myself. Would I go back and change a thing? Certainly not! I kept the atrophy to a minimum for a lot longer than would otherwise have been possible.

I had seven... count em seven... specialists dx me with rsd/crps. I was one of the first to ever use Guanethidine, during the gov't trials. So, if you think you know all there is to know about this disease, and can dx people, think again.

Unrouley1, please don't leave us. After our time in chat this morning, you know exactly how I feel about all this junk. I know I was about to do the same thing, but I have changed my mind.

I doubt many of you saw the extra-long post I wrote earlier. I deleted it at the request of Chemar. She is right, of course, that's why she's our fav mod ;) But I wrote what I did out of defense of a friend who I felt had been unfairly treated by another. I'd do the same for all of you, too.

The rest of the world has no idea what we go through on a daily basis. We truly need this site, or at least I do! To think that one thread could endanger all we have here... well, the thought makes me sad.

This is just a thought- we have talked about RSD in much length in the past and the past posts may be helpful to you. It is hard for most of us, being very drained and in a lot of pain, to post continuously. We are friends and I just want to see you being helped. Helping your self more is good. I love to help others here, but I feel like I would help you more by telling you to look at previous posts with lots of people's experiences than by me posting a lot to you now.

Quote:

Originally Posted by artist (Post 118149)

Your strenuous exercising may please you (and perhaps a couple of other posters) but according to your pattern it does not seem beneficial. Moderation may get you further, adapting to a regime of exercise broken by frequent rests.

I highly advise you to STOP the strenuous exercise because I know, from my experience, it is NOT good to do! It made me SO much worse and spread my RSD terribly... maybe a bit more gently??

Sweetie, here is a good article about RSD/ PT:

Quote:

"Do physical therapy and occupational therapy reduce the impairment percentage in reflex sympathetic dystrophy?", Oerlemans H.M., Goris J.A., de Boo T., Oostendorp R.A., Allied Health Services - University Hospital Nijmegen - The Netherlands, Am. J. Phys. Med. Rehabil. [78(6):533-9], November - December 1999

Although several sources tend to disagree on the importance of physical therapy in RSD patients, many do agree on the necessity of movement and of this movement not being aggressive.

In November - December of 1999, a study was performed on 135 RSD patients with RSD present less than a year. The importance of physical therapy for these RSD patients, under these circumstances (RSD < 1 year) was investigated. The study revealed that physical therapy could not significantly reduce a patient's impairment level.

When PT does next to nothing in improving a patient's condition, it might even make things worse if not done properly, if the patient's condition is not understood or taken into account.

The general rule is, no aggressive therapy (because of possible flare ups) and movement within the pain limit. RSD patients can not be pushed beyond the limit, this will often make things worse. However, they do have to exercise. Keeping active is important. A convenient way needs to be found for them to move with the least possible harmful consequences.

Establish what they can still do, find out how long they can make good use of the arm or leg and start from there. Don't try to work with them once a day for half an hour to get the maximum out of your session. This can have a bad effect.

Recently, it's been proven that there is a lack of oxygen in the tissue of the RSD affected limb (Dr. Goris-The Netherlands), which explains why too much physical therapy all at once is pernicious to the patient and will worsen the condition.

Too little movement may also worsen the condition. Patients need to move lots, but in bits. The whole day is their training schedule and exercising frequently during the day is good, in amounts they can handle. Work with them and give them a training schedule they can do throughout the entire day.

When establishing such a schedule, try to keep a good balance between enough rest and counterwaying movement. Small and frequent bits of activity broken by rest are preferred. Movement each hour, each half hour.

Late stage RSD patients have osteoporosis and in no small way. Even RSD patients in early stages may have weak limbs. RSD patients with atrophied limbs barely have muscle strength. Take these things into account when working with them. Exercises in water (body temperature) might be most beneficial and will eliminate a great deal of pain while moving.

The therapist must be on the lookout for recurring signs of inflammation with the patient. These are looked upon as a good and
correct indicator of "too much".

From:
http://www.rsdhope.org/Showpage.asp?...9&PGCT_ID=4012

An article for you, that may give you some ideas/ understanding.

Quote:

PHYSICAL THERAPY - HOW DO YOU FIND A THERAPIST ?

HOW DO YOU LOCATE A PHYSICAL THERAPIST KNOWLEDGEABLE ABOUT RSD/CRPS?

There have been a lot of questions recently concerning this topic so we thought we would put together some thoughts and tidbits that we have learned over the last decade or so.

The good news is that current RSD/CRPS patients have a great head-start on those of us who came before because you have so much more knowledge about RSD/CRPS than we did a dozen years ago. Not only what you yourselves have learned but also what is available on the internet through websites and listserves, etc.

With this knowledge in hand, you can call and talk to the lead therapists in these clinics and ask them about their knowledge of RSD. You can find out very quickly how much they actually know about the disease and about treating it with PT by asking a few simple questions. Their answers will tell you whether or not to trust your body and health with them. In the hands of the wrong therapist your RSD can actually accelerate and worsen the same as in the hands of the wrong Doctor.

Here are the basic questions I would ask a Physical Therapist;

1) Are you familiar with Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome?

If the answer is no then you probably should move on. There may be cases where you don't have many options in your area and you may be able to find a therapist who is willing to learn about the disease. In which case we have tapes, brochures, and of course the website to help. Your Doctor may also be able to provide guidelines for them.

I know that some people suggest just only giving them the initials RSD and seeing if they know what they stand for, or not asking about CRPS and seeing if they are up to date with the latest name change but this isn't about games. You want to determine their knowledge of actually treating the disease. They may not know the letters but may know the disease. They don't have to know everything about the disease, that is where your Doctor comes in. What is paramount here is DO THEY KNOW HOW TO TREAT YOU?

2) Have you treated RSD/CRPS patients in the past, and/or currently, and if so, how many?

Ideally the answer should be four, five or more but if you don't live in a large city that may not be feasible based on the number of patients available. However, it isn't enough for them to simply answer "None but we do treat Chronic Pain patients".

RSD therapy and CP therapy are two totally different animals due to two key components; allodynia and the adverse reaction RSD patients have to ice, or hot/cold contrast therapy. We touch on allodynia below and most everyone knows how ice causes RSD to worsen and/or spread.

3) Do you have a therapeutic or warm water pool?

This is a pool that is at least 88 degrees. It is used for patients with all sorts of injuries as well as diseases like arthritis, fibromyalgia, and of course, RSD. It is the BEST form of therapy for RSD. It is without a doubt the form of therapy RSD patients should be doing in our opinion. From everything we have seen, heard, and read over the years it seems to have the best results with the least impact. It also has the added benefit of reducing allodynia in many cases while at the same time increasing mobility. The end result being not only a reduction in pain but oftentimes a reduction in medication as well. We do have an article on the website about this;

AQUA THERAPY

Allodynia is part of the First of the Four Symptoms of RSD, see FOUR MAIN SYMPTOMS OF RSD

Allodynia is an extreme sensitivity to touch. Something as simple as a slight touch, clothing, sheets, even a breeze across the skin on the affected area can cause an extreme amount of pain to the patient. Pain can also be increased by sounds and vibrations, especially sharp sudden sounds and deep vibrations.

This is one of the most painful parts about RSD and this side effect can be reduced by Aqua Therapy. It takes quite a few visits but eventually you will notice a difference and it is amazing! This also seems to be the least painful way of reducing allodynia. After all, who doesn't like a nice dip in a warm pool? It is especially nice during the winter for those of us who live up north!

If you are on Medicare, this type of therapy is typically paid for by Medicare and there is no Physical Therapy cap for RSD patients. Your Doctor just has to write the prescription for it and, of course, you have to show improvement. A decrease in the allodynia is enough to show improvement and continue treatment. Being in the pool you greatly decrease the impact on your body because the water displaces your weight.

Land therapy, in contrast, whether it be massage, band therapy, exercises, or any type of stretching where they stretch your body by grabbing you and pulling, can be very painful due to the allodynia as well as the impact of the exercises themselves on RSD limbs.

4) If they took you on as a patient would they automatically put you into their "chronic pain patient program" or would they be able to customize a program for you based on the needs of an RSD patient?

This may seem like a dumb question because your thought would be, of course they would tailor any new patient therapy to the needs of the patient. However, what ends up happening in many cases, especially with certain types of insurance and in some WC cases, they are told what program to put you into and it is usually the Chronic Pain Patient Program. This is a standardized program and is fine for most types of chronic pain. It is set on the principle of NO PAIN, NO GAIN! It can involve everything from classroom instruction (and many RSD patients cannot sit for very long without pain), to land therapy (which we all know can result in extra pain for RSD patients).

With RSD, NO PAIN, is ALL THE GAIN, as a Doctor friend of mine used to say. The PT program for an RSD patient must be a combination of Aqua Therapy, a basic water therapy program typically based on the Arthritis Society's Water Therapy Classes. It involves stretching, walking, and even some light weights, but all done in the pool. In addition some therapists will use warm packs afterwards.

It is important to remember that while the warm packs work very well for most patients they must never be followed by the cold or ice packs as the ice will simply further damage the already weakened myelin sheath surrounding our already damaged nerves. Even though the ice may feel good for a brief time it will end up causing severe damage and repeated use of ice packs or hot/cold contrast therapy will, in many cases, accelerate the RSD/CRPS.

5) Where do I start to look for such a Physical Therapist?

The best place to start is in the nearest large hospital. Sometimes you may have to travel an hour or more but if you find the right therapist it is worth it. Since many of your questions can be asked over the phone, call as many places as possible. Don't be put off by the person who answers the phone either. You want to talk to the Director of the clinic if possible or, at the very least, one or more of the physical therapists.

If they can't talk to you right then leave your name, number, and the reason why you called (looking for a therapist who treats Reflex Sympathetic Dystrophy), and a time to call you back. Find out when a good time to call back is; sometimes the mornings are very busy in clinics and the afternoon is a better time to be able to chat with someone, it all depends on the clinic.

There is nothing wrong with the smaller physical therapy centers but they are less likely to have a therapeutic pool so it is best to stick with the larger hospitals.

Also, talk with your Doctors; your RSD Doctor, your GP, etc. Chances are good they know of one they can recommend.

Remember, a good Physical Therapist can be a key member of your medical team and play a very important role in helping you get your life back!

Hopefully this will give you a head start! If you have ideas that you would like to add, send them in to RSDHope@mail.org

Peace, Keith Orsini

Keith has had RSD/CRPS since 1974. He has full body RSD/CRPS. He is not a Medical Doctor. Be sure to talk over any advice with your Doctor.

And, it is worth being checked out that you REALLY do have RSD, because it is quite rare, I believe that you'd really be able to do all this exercise. UNLESS you are going into remission... ?! It is a good thing that you are getting spinal MRIs and such... I am being checked for stuff other than RSD too because my case is considered "rare". So that REALLY is a good thing. Better to be SURE!

Many soft hugs, and I don't want to offend you in the least, I wish you well.:hug: And I thought long and hard on whether to post this or PM you, and I thought it better to post, as there is a differing opinion on you maybe not having RSD (it always is a good thought to check it out-- you'd much rather them find it was something curable than RSD, and as RSD is a dx of exclusion, than if tests come back fine you will be even more sure it's RSD).

Praying for you! :hug:

I hope you don't leave, I know you need support, and advice is so often needed.

I think most of the self editing has been done and this main topic has run it's course.
So now I am going to lock this thread in hopes that all will step back, resolve those inner feelings and start fresh.

You are a close group here and I hope all can forgive and move past this.:grouphug: