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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 12-03-2003, 06:57 AM   #1
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Miss Megara HB User
Newbie here and I have an RSD Question

Hi all, I am trying to determine whether or not I have RSD. I am a 29 year old female and may have it as a result of surgery.

It might be best to give a little 'history' on my situation first:

I had a tumor in my baby finger eating away (thinning) the bone. I went for a surgery back on June 21/01- to take out the tumor and damaged bone from my finger, to replace it with good bone from my elbow.

Fast forward 6 months - the tumor grows back. January 17th 2002 – I go for the EXACT same surgery again…this time – the pain is unbearable; as my arm had yet to heal from the first one 6 months prior.

Almost 2 years have passed, and the pain is still present now in my whole arm from the elbow down. The surgeon suggested amputating it, but no guarantee that it would work. I finally tried acupuncture. Among many other things - the acupuncturist found signs of ulnar nerve entrapment as a result of damage done during the second surgery and has been now trying to correct this problem for the past month or so.

The pain started to get worse and certain areas of pain are 'returning'. He spoke with my family doctor - and they have concluded that it could be RSD. Yesterday, they took x-rays on the left side of my body to rule out any bone tumors or something of the like first.

Here is what I am experiencing, although I have no idea which (if any) are signs of RDS. The pain is most areas of my left elbow down, dry heat helps it and the cold makes it hurt like hell. At times it is extremely painful to grasp or pick up something with this hand. Lately I've also noticed a big problem w/shortness of breath and my head hair has been falling out (although my doc chalks the hair situation up to iron deficiency).

Both doc's admit to not knowing enough on RSD to pinpoint it as such. So I will be sent to a specialist (neurologist). I am just obviously a little scared and was hoping for some input from you fine people before then.

Thanks in advance for your help. SO glad I found this place!
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Old 12-03-2003, 08:19 AM   #2
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Aly B HB User
Re: Newbie here and I have an RSD Question

Hi Miss Megara,

Sorry to hear about the pain you have been experiencing in the last couple of years.

All of the symptoms that you describe could well be symptoms of CRPS (RSD or causalgia). There is no definitive test for this disorder, diagnosis is usually made purely from clinical observation, often over multiple visits as the symptoms may not always be present.

I have included below the 4 major signs and symptoms of RSD as well as some of the minor symptoms that may occur.

Hope this helps,



Aly



Symptoms of CRPS (RSD and Causalgia)

CRPS Symptoms



There are 4 main symptoms in CRPS (RSD and Causaligia), but there are many more effects that is has on the body.


The 4 main symptoms are:

1. Pain

This is the major symptom of CRPS, which is extremely intense, often leading to a lack of sleep.

Described usually as severe, constant and burning in nature; like the affected area was on fire or in a pot of boiling water. You can also suffer from throbbing, aching, stabbing, crushing, sharp or tingling pain in the affected areas. The painful areas are not limited to the original accident or trauma site. The pain is more severe than what is expected for the type of injury sustained.

Allodynia usually accompanies this pain. This is an extreme sensitivity to a stimulus that would not normally cause pain. A slight touch, clothing, even a breeze can cause extreme pain. Hyperpathia and Hyperesthesia can also be present (Increased sensitivity to painful stimulus including pressure and touch which can continue after the stimulus is removed). Pain can be caused by vibrations and even loud noises and sound.



2. Inflamation

Inflamation is present in MOST cases of CRPS and can be present in many forms. These include swelling (edema), colour changes (mottled skin, purple, blue, red or pale discolourations), skin rashes, bleeding in the skin, bruising easily, swelling in and around the joints and freezing of the joints.

Inflamation is not always present.



3. Spasms

The blood vessels of the skin and muscles spasm causing a feeling of coldness. This can also result in tremors, muscle weakness or fatigue, movement disorders (dystonia), weakness and clumsiness of the extremities and the tendency to fall.



4. Insomnia and Emotional Disturbances

CRPS affects the limbic system, the part of the brain in which the sympathetic nerve fibres carrying the pain and other impulses terminates. This is positioned between the brainstem (at the base of the neck) and the brain's cerebral hemispheres.

Disturbance of the limbic system causes depression, aggitation, irritability, insomnia, short term memory loss and lack of judgement or concentration.



SOME Other Symptoms of CRPS


Movement Disorders - difficulty in beginning movement of the affected area or the inability to move the area. Eventual development of dystrophy and/or atrophy.

Skin Changes - Skin may change colour. May be mottled. Can become shiny, dry and tight. Rashes and sores can occur (neurodermatitis). The skin can become thin and fragile or may become quite thick, developing elephantiasis.

Sweating - increased sweating in affected areas or lack of sweat especially in later stages.

General Weakness - Body Fatigue

Increased Tone - Muscle and skin tightening

Increased Reflexes - Tremors of affected extremities and muscle spasms.

Hair/Nails - These may grow at an increased rate in early stages and/or then slow or stop growing in affected areas. The hair can also change in colour and thickness. Nails can become grooved, cracked, discoloured and brittle.

Eye Sight - visual disturbances can occur including blurring, difficulty focusing and dizziness in the form of vertigo (either the body or objects moving around).

Hearing - tinnitus (buzzing or ringing in the ears).

Joints - decreased ROM (range of movement), Tenderness and swelling.

Bones - patchy osteoporosis and increased vascularity

Miscellaneous - loss of libido, relationship problems, anxiety and panic disorders. Immune system disturbances. Inability to control body temperature and fever, especially in the late stages of CRPS.

 
Old 12-03-2003, 08:34 AM   #3
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Jewel2 HB User
Re: Newbie here and I have an RSD Question

Dear Miss Megara,
I'm very sorry you've been living in pain for so long. I'm new to RSD, and there are some people on this board that have more knowledge about it than I do, but here's my two cents.

First of all, if it is RSD, DO NOT LET THEM AMPUTATE!! RSD is a nervous system disorder. Your hand and elbow are not the culprits even though that is where you are feeling all of the pain. From what I understand, amputation would only make the RSD worse as your body reacts to the new trauma.

The symptoms you listed (besides the hair falling out) are similar to mine. My RSD started as a result of surgery, too. There are some great websites that list specific symptoms. Two good ones are the Mayo clinic's site (you'll have to find the link on their site for Complex Regional Pain Syndrome, I think in their pain management department) and rsdhope.org.

You really need to find a doc who is familiar with RSD and the treatments and meds available. I'm quickly learning that the earlier the intervention the more likelihood of getting it into remission.

I'm glad you found this board, too. The people here have become a second family to me already. They understand the fear that I'm experiencing and have a lot of experience and wisdom to offer. The prayers we say for each other are an added blessing.

Best wishes to you!!! Please keep in touch.

Julie

 
Old 12-03-2003, 09:09 AM   #4
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Miss Megara HB User
Re: Newbie here and I have an RSD Question

First off - thank you SO much for your prompt responses.

Aly - as I read through those symptoms; there are several others I can relate too. Especially insomnia, body fatigue and pain being brought on by loud noises. My accupuncturist also was shocked to discover how small the muscles in my left hand were. So small that he 'assumed' I was right-handed (I am left hand dominant)

Jewel - As I mentioned about the hair loss; my doc believes this to be a result of iron deficiency, but I thought I would mention it anyhow, as I dont really know all the symptoms for SRD. You mentioned that your symptoms were similar to mine, does your also get 'freezing cold' all on its own??

thanks for the warm welcomes - I appreciate them more then you know.
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Old 12-03-2003, 09:15 AM   #5
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Jewel2 HB User
Re: Newbie here and I have an RSD Question

Dear Miss Megara,
Yes, my hand has a thermostat of its own. Mostly it gets hot and sweats, but lately it has been colder than my other hand. It usually turns dark when it gets cold.
Hope this helps.
Julie

 
Old 12-03-2003, 10:03 AM   #6
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Miss Megara HB User
Re: Newbie here and I have an RSD Question

One more quick question Jewel and I promise to leave you alone.

Does the pain 'come and go' in that some days you barely feel it and at other times - the pain is nauseating?
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Old 12-03-2003, 11:44 AM   #7
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Jewel2 HB User
Re: Newbie here and I have an RSD Question

Dear Miss Megara,
I'm happy to try to answer any questions you might have.

Yes, the pain ebbs and flows moment by moment and day to day. I actually just got up from resting after a bout of nauseating pain (brought on by some aggressive physical therapy). I don't have chronic intense pain like some of the people on this board have. I have chronic low levels of pain with bursts of intense pain when my hand gets cold or when I try to use it or have PT. Occasionally it flares unprovoked, usually intense itching or burning pain.

Please feel free to ask any and all questions you might have. Like I mentioned earlier, I'm a newbie and won't have a lot of answers, but there are some veterans on the board who really possess a wealth of information.

Best wishes!
Julie

 
Old 12-03-2003, 01:57 PM   #8
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Re: Newbie here and I have an RSD Question

Hi Miss Megara. Welcome to the board, though I am sorry you have to be here. You've gotten alot of good information already, but I do want to add a couple of things. Never, EVER use ice on your RSD limb even for swelling! It will only make the pain worse and can cause the rsd to spread, and never, EVER let anyone take blood or start an IV in that limb either, they can make your pain worse too, and I believe can cause spread also.

That said, most people go to a pain clinic to see a pain management specialist, usually these are anesthesiologists. If indeed they do diagnose you with RSD, Stellate Ganglion Blocks (SGBs) are probably what you need, as it's the best way to try to get the rsd into remission and stop or lessen the pain since you have an upper extremity affected.

Heat is the best thing for the pain, it really can help when the pain is acute. Hot soaks with the epson salts are helpful too, as is the heating pad you said you use. I use moist heating pads when I use a heating pad as the moist heat penetrates deeper than dry heat, but truthfully, what I use the most are those microwavable gel pads. Just pop 'em in the microwave, wrap up your painful area, and you have heat 'on the go.' You're not stuck in one place because of an electrical cord, and it feels so good on my hand. A lot of us here have a parafin wax machines too. It's great to stick your hand in when the pain is acute.

There's a bunch of meds for nerve pain, and then pain medication itself. Pain meds won't stop the pain, but they make it easier to bear. Most of us are on one antidepressant or another (or a combo of them) too.

I sure hope whatever you have isn't RSD/CRaPS <lookin' at Aly>. RSD/CRPS is not curable, but it is treatable, and it is the most painful chronic pain condition there is.

If you have anymore questions, please don't hesitate to ask. You can come here to vent too, it's a great place to get what's bugging you off your chest. We all do it (I'm about to go vent myself, lol), and it really helps. We do care.

Sincerely,
Cathy :woot:

 
Old 12-03-2003, 02:49 PM   #9
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Miss Megara HB User
Re: Newbie here and I have an RSD Question

Wow - thanks so much for the input.

Yes - I have already discovered that heat is the best thing for my pain, I have a heating pad at work and at home. I also have a parafin wax machine.

I am WELL aware of how 'cold' is NOT good. Heck - I just take the clothes out of the washing machine (cold water) and the pain is horrible all the way up my arm.

Thanks and at least I now know I have 'somewhere to turn' should I need it!
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Old 12-03-2003, 07:05 PM   #10
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ladymystickwolf HB User
Re: Newbie here and I have an RSD Question

Hi! So sorry you have to come here because of something like this, but you've found a good place to come to!
I can identify with the hair falling out thing. I've had RSD since Feb. of this year. In the last month or so the hair on my head has begun falling out. It doesn't come out in handfuls or anything, but I have noticed that it's coming out all the time! I run my hand through my hair and have it hanging on my hand and it just flies off! It sucks , but I know it's the RSD because I've never had this happen before. I have been anemic before and very seriously anemic at that and have never had my hair come out like it's doing now. Also another friend of mine, her hair does the same thing too and she's had RSD for about 3 years now.
I have this in my legs, feet and left hip. My legs are always very cold and purple and splotchy a lot. There's a lot more things that I've noticed about me that has changed. My skin, my nail growth, rash, sores. The only thing that doesn't happen anymore is swelling. My legs don't swell at all, but I'm rather glad it stopped though!

Karen

 
Old 12-03-2003, 07:42 PM   #11
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Smile Re: Newbie here and I have an RSD Question

Hi MissMegara and welcome to the board,

I think all the information you need has been covered. I just wanted to tell you that this is a great place-very informative and supportive. I've had RSD for 17 years. The losing the hair thing is interesting to me...since I've had this for so long, I don't know what certain symptoms are related to RSD or not. I learn a lot from people here who have had it for less time because they can usually relate symptoms with RSD because it's newer to them. (I hope that makes sense) Anyway, the hair on my head has been coming out very easily for a long time and now I'm thinking it could be the RSD because of what you and Karen said. I also hope you don't have it, but if you do, you will get a lot of great information here. Good luck. I hope you find out soon either way.

Sharon

 
Old 12-03-2003, 11:09 PM   #12
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Re: Newbie here and I have an RSD Question

Hey guys? Someone in oz was talking about how her hair was falling out like ya'll are describing, and it turned out to be an iron definency I believe. I'll look for the post tomorrow to make sure, and will let you guys know. We're on so many meds that make our already out of whack systems more whacky... you never know what all it messes with.

Now it's *really* nite nite time.

<Hugs>
Woot, The Eyebrowless One

 
Old 12-04-2003, 05:08 AM   #13
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Re: Newbie here and I have an RSD Question

Yep, it was from a very low iron level, and an even lower B-12 level. Might not be a bad idea to get bloodwork to check these.

<Hugs>
Woot

 
Old 12-04-2003, 06:15 AM   #14
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Miss Megara HB User
Re: Newbie here and I have an RSD Question

Hi guys - thanks for the welcomes!

My doctor's first response to my hair falling out was either iron deficiency or a thyroid problem - he sent me for bloodwork for both.

My iron level is low at 6 and my ferritin level is low at 22, my hemoglobin is fine at 136. So what I understand is that I am not anemic; as my hemoglobin level is normal.

I have read all the 'symptoms of RSD' listed here and I can relate to most of them. However; what seems to me as one of the most predominant is skin colour change/texture change etc. I don't know how much of an indicator that is of RSD but I don't have any of that.
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Old 12-04-2003, 12:36 PM   #15
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pammallo HB User
Re: Newbie here and I have an RSD Question

Hey Miss Megara.

Welcome to the board.I`v been reading the messages on the board and saw you had the ulnar nerve intrapment. I had it in my left elbow back in 2002 do to repetion work. Had surgery in June 2002 and diagnosis with RSD in Sept 2003.

One thing about RSD you do NOT have to have all of the symptoms to be diagnosis with RSD. The buring pain is the hallmark symptoms.

Again Welcome it a great place to vent:>

Pam

 
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