My RSD/CRPS Story....... by Miss Vanessa

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From: MissVanessa16 Sent: 12/28/2006 9:37 AM
Obviously, I have type 1 RSD.


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From: Isle_of_Ewe Sent: 12/29/2006 12:13 AM
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From: Liz3079 Sent: 12/29/2006 2:25 PM
Hi Cindy

I know you meant well.You wasnt trying to say she didnt have rsd. But Im like you,maybe a person doesnt have rsd.Its a misdiagnosis.I keep praying thats what they did in my case. But I do have that burning pain.Its horrible and it has spread to my torso area. I keep hoping maybe I have an entrapped nerve but I doubt it.Id be so happy for someone to say they can make me like new again. This rsd is a total nightmare.

Love and gentle hugs.
Liz


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From: MissVanessa16 Sent: 12/30/2006 8:52 PM
Okay, I understand- you just hadn't realized I did mention burning pain in my original post. I didn't think you were saying I didn't have RSD, I was just confused because you were calling it causilgia.

I know what you mean- hoping no one else has RSD too... It is not a fun thing. I wish it wasn't true, but it is...

Hugs to you... hope you are having a good day.


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From: MissVanessa16 Sent: 12/30/2006 8:53 PM
You didn't upset me, Cindy. I understand now.


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From: kathyk Sent: 12/31/2006 10:32 AM
I've had RSD for several years in my foot. I've been through all of the things that you all are talking about -- doctors who thought I was crazy, a surgery that was unnecessary and made me worse, being tapped in a body that was in constant pain. At one point in time it spread to my other foot. For about one year, I couldn't drive in the car with my foot on the floor (the vibration set me into a pain spell). Couldn't wear shoes. Couldn't walk to the end of the block. Each year it gets a little bit better. Finally, I'm now at the point where I can wear shoes, not be in pain more than 80% of the time and execise without going into a pain spell.

I want to encourage each of you that you can improve. Here are some of the things that helped me. Anything that helped, I would add to my daily program.

Drugs -- It doesn't mean you have to be on them forever, but they can bring you to a new level of improvement.

Zostrix HP -- This needs to be applied to the core of the RSD at least three to four times a day. More if you want. Be sure to wear disposable gloves when you apply this.

Whirlpool -- Warm or hot for me works best.

Massage therapy

A positive thinking pain specialist who told me I could get well because I was happy and had a great attitude. He was willing to give me a prescription for anyting that might help so I could try it, like Biofeedback, PT, medications, pain patches, etc.

Lidocane pain patches -- These help me.

Do as much exercise daily that your RSD will tolerate without going over the line. It's crucial that you learn where your line is and respect it. As your RSD improves, so will your tolerance for exercise and activity.

My pain doctor had a man with RSD in a wheel chair and now he's out of it and can square dance! ! !

It's a long road and takes a lot of patience, but with determination, a good attitude and by the grace of God, you can all improve.

Please e-mail me or call me if you need encouragement.

Kathy
E-mail: kkeefrider@hotmail.com
Phone: 972-662-7778


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From: airedale-mom Sent: 1/9/2007 7:16 PM
Hi, My name is Mary Anne and I was just diagnosed last week. Like you Vanessa I have it in my shoulder,arm and hand. I lifted a a wheel chair into a van at work in December several times and had low back pain for the rest of the month. I took muscle relaxers and continued to work. December 27 I had the worst pain in my shoulder blades. It spread down my left arm. The doctor thought I pulled a muscle and he ordered Darvcet. I worked one day and I went to the ER. They put me on Percocet. I was pacing, crying and my hand was ice cold. I saw a neurologist last Friday and He diagnosed RSD. I am on Neurotin, Dilaudid and Elavil. I have a tens machine. Thank you Derrick and Dave for your post. My pain is so much worse between the hours of 5 and midnight. I had my second PT session today and we could not figure out why. Also I have much less function of my arm at night. Does anyone else have large hard knots that move on your extremity. The Therapist asked if I told the doctor but mine are really noticable. Maybe they are muscle spasms. Also, my elbow is really painful. The therapist said I may have torn (I can't remeber whether she said tendon or ligament) that attached to the elbow. She said the muscle spasms might have done that. Does that have to be repaired? I don't see the doctor until next Friday. One more question - a friend whose husband is a physician said I should have a nerve block asap. Has anyone else had one?
Kathy - thank you for your encouraging post!!! I an determined to fight this!!! I want to enjoy life. Take care, Mary Anne

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From: MissVanessa16 (Original Message) Sent: 12/25/2006 2:27 PM
My story of RSD/ CRPS
Last October (2005) I shut my right thumb in the van door (needless to say, I wasn't paying attention! ). It wasn't broke! It got all swollen and I had pain all in my hand and up my arm. It hurt for about 2 weeks or so then the pain seemed to have left.

A few weeks later I started having pain in my right arm again. It was just slight aching, shooting pain and stayed around every once in a while.

In January of 2006 I fell in the snow with my dog. I hit my right shoulder and I started having that arm pain again.

Throughout the Spring/ Summer of 2006 I was having slight pain in my right arm. It would last a few days, and come every few weeks. I went a month without the pain, and I just thought nothing of it. Repetitive motion seemed to set it off (painting, scrubbing type movements), and then I'd take Motrin or Tylenol and rest it.

In September the pain got worse. It was all in my right arm and it was the really aching/ shooting pain. I went to a Chiropractor (thinking maybe I had a pinched nerve), and she gave me an adjustment. From there things got WORSE and worse. After the adjustment I had severe pain in my whole right arm/ shoulder/ neck and all down my back (only on the right side though). The next day I went back and the pain was excruitiating... she did neck xrays, and the next day I got a neck MRI. Everything came up NORMAL, with the only exeptions being a LOT of muscle spasms.
After the neck MRI I went to the ER because the pain was dreadful. I was crying it was SO bad. At the ER I was told I was having muscle spasms, and that I should take it easy. I was given pain meds and muscle relaxers.
A few days later I was feeling much better. I was just having slight arm pain. Then I started having severe lower back/ leg pain, which was sciatica (I went to my Dr., and she sent me for a lower back xray- which showed up as muscle spasms).
I next went to an orthopedic Dr. (beginning of October 2006) since I still had the arm/ neck pain, which was getting worse. The leg/ back pain dissapeared. He told me that I had adhesive shoulder capsilitus, and he sent me to 3 weeks of PT (3 days a week)...
PT was rough the first two days and then the pain all dissapeared! I had no pain whatsoever for 6 straight days! Then at PT I was doing one of my regular excercizes (just added a 2 lb. weight) and boom!!!!!! All the pain comes rushing back through my right arm/ shoulder/ neck. OWW!! The next few times at PT I could barely do my excercizes because of the pain. The PTs said to go back to the orthopedic Dr.. since I had all of this pain and since my shoulder was now "popping". I went back to my Dr. (reg. Dr.) who sent me for a shoulder xray and MRI. The xrays came up normal (just muscle spasms) and the MRI showed a teeny interior labrum tear (which is nothing, just causes some popping). The pain was unbearable and I was crying from it. I went back to my orthopedic Dr. (end of October) and he dismissed all the stuff I told him... he basically kicked me out of the office, telling me to "go get another opinion". He sent me back to PT. I went, but we couldn't do much because at this point I was having awful sharp/ aching pain in my neck/ shoulder and all down my right arm. I went a few times and then the beginning of November my right hand started turning purple/ getting really cold/ sweating/ swelling a teeny bit. I spoke to my PT, and he thought that maybe the shoulder popping was cutting off a blood vessel/ I was losing circulation. So... he told me to call my regular Dr.. I called her, and she wanted me to see a Dr. from DuPont, but in the mean time since my arm hurt so bad/ was getting hot/ heavy as well she told me to put my arm in a sling. She had me take muscle relaxers, which got rid of the neck pain (yay!). SO... for about two weeks I had my arm in the sling. My hand was constantly going purple/cold/sweating.... my whole arm/shoulder were hurting so bad...
On November 16th I went and saw an orthopedic Dr. from DuPont. At this point my right arm/ shoulder was hurting really bad, and I had a "cold, sweaty purple hand". I started telling her this story... and I hadn't even finished when she said "I am 99% sure you have RSD". She than called a PM DR. who confirmed that diagnoses. I couldn't believe it!! She actually knew what was wrong! I was so relieved that someone actually knew what was wrong. She started me on neurontin, and she sent me to PT. See, from not moving my right arm my muscles were VERY tight, and I could barely lift my arm (she originally thought I had a frozen shoulder, but it wasn't). So... since I was in chronic pain (obviously, wth RSD) she sent me to a pain management Dr.. The PM Dr. gave me meds for the pain (percocet, only to be taken to get through the rough PT) and she sent me to PT 5 days a week. That was November 20th.

Since then? I began PT 5 days a week, for recovery of my right arm ROM, strengthening and desensitization. Well, I seemed to be making a little bit of progress. Then December 6th it spread into my whole left arm/ shoulder. The sensitivity to touch seems to be getting worse, to the point of something brushing against me/ rubbing me HURTS SO BAD and I cry from the pain.
Currently... I have been having pain in both of my arms/ shoulders/ shoulder blades. Sometimes it's in my hands. It is sharp burning, aching pain. Sometimes I experience numbness, tingling, these muscle spasms, and I have the slightest swelling, purple hands. I have frequent tempature changes- often I feel like my arms/ shoulders are burning up while on the outside I am FREEZING!

I am on neurontin 300 mg 3x a day, I go to PT 5 days a week and I am trying my best to work on stuff at home as well.

It was strange how it spread... one day no pain AT ALL in my left arm, then it was full blown... showing nearly every classic RSD symptom.

My Dr. said I am such a classic textbook case... nearly every symptom.

My dominant hand is my right... and it all began with that one.

I do hope that this whole story made sense! That's just about the whole story, with some summed up.



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From: Liz3079 Sent: 12/25/2006 7:17 PM
Hi

I am so sorry for all you have been through.I read your 2 posts and pretty well everyone with rsd does have problems sleeping. Usually you may only sleep a couple hours and awake another couple and back to sleep for one or 2 more hours.I dont think anyone here sleeps all that great but not sure. I dont sleep good and Im so very tired all the time.I used to have all kinds of energy till this.

I dont know much of anyone who got better from rsd but there is always hope for remission. If you keep up with the posts here you can see what everyone is doing for their pain.I dont like the meds so Im toughing it out but its rough .With nothing I am really miserable but I found the meds dont do much for me anyhow.

Muscle spasms are just part of rsd.I have had them so bad that I was just miserable.Just went through 2 weeks of them in the left side of my back.Im really worried the rsd is spreading to my back.

I have had my rsd for 2 years and 5 months. mine started in my wrist from a fall.I broke my wrist. It just kept hurting and hurting and hurting .I was made to go back to work as my workplace said they had jobs i could do one handed. It was a nightmare for me. Mu workplace closed.I toughed it out till the end so Id get severence pay. I was glad they closed. It was a nightmare trying to work but they had a no lost time policy there so if you got hurt at work they found a job you could do.My left hand is startting to atrophy. The dr. said it was because the blood flow to that hand is not good as the veins are constricted from the rsd or something like that.I use it as much as I can but it hurts to use it for anything.

Here you will have lots of nice people to correspond with.They know a lot about rsd.WIth rsd you need people who understand what you are going through. Reading a book about rsd is nothing like talking to people who experience it day after day.Its not a fun thing to have.I sometimes get so depressed.I wish I was like I used to be but Im not. Gotta make the best of things.

You take care. Hope you had a nice Christmas.
Liz


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From: Isle_of_Ewe Sent: 12/28/2006 1:45 AM
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From: Isle_of_Ewe Sent: 12/28/2006 1:53 AM
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From: MissVanessa16 Sent: 12/28/2006 9:31 AM
I was a little confused about your post... could you re-explain please, Cindy?

I do have the burning pain. I am so sure I have RSD from the descriptions.


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From: MissVanessa16 Sent: 12/28/2006 9:36 AM
Oh, and by the way, people do get RSD without nerve injury... strange but true.

"CRPS (full name Complex Regional Pain Syndrome) is the new World Health Organisation name for RSD, Reflex Sympathetic Dystrophy and its definition is subdivided into CRPS type I and CRPS type II.

CRPS is pain that develops after a relatively minor injury to an arm or leg, but lasts much longer and is much more severe than would normally be expected.

CRPS II is diagnosed when pain can be traced to an identifiable nerve injury. This condition is sometimes called Causalgia (literally "hot pain").

CRPS I is diagnosed when similar symptoms are manifested but there is no identifiable nerve injury. This is intended to cover the strict definition of Reflex Sympathetic Dystrophy (RSD).

For patients the difference is academic because the symptoms are similar, especially the pain, and the same range of treatments are offered. Note also that a "Type I" diagnosis indicates that no nerve injury has been identified - which is not the same as saying that no nerve injury exists."
Derrick Phillips - Editor of RSD Alert



"Complex Regional Pain Syndrome (Chronic Neuropathic (sometimes called Neurogenic) Pain, RSD, Causalgia, is characterised by a collection of symptoms and there is evidence that shows that these types of symptoms were
being observed in patients by Doctors over 150 years ago. So it isn't new - it's just that these symptoms have been given lots of different names (Sudeks Atrophy, Reflex Sympathetic Dystrophy, Causalgia, Chronic Traumatic Oedema, Shoulder Hand Syndrome, Steinbroker Syndrome, Sympathalgia, Sympathetic Overdrive Syndrome - and more!).

In 1992 an International Team of Doctors introduced a new name that was an attempt to try encompass and simplify the naming of Chronic Neuropathic Pain disorders. They called this 'Complex Regional Pain Syndrome' (CRPS) - and gave it two parts:

CRPS Type 1 and CRPS Type 2.
CRPS Type 1 - (Reflex Sympathetic Dystrophy).
Is caused by - a simple injury, football, athletics, falling over - perhaps a fracture, perhaps a minor operation. A nerve or tissue gets injured - and the resulting pain is totally disproportionate to the injury (a severe intense 'Burning' pain that is not relieved by strong pain killers). The pain may go on for months, even years long after the initial injury has healed. The pain is often much worse at night - and not just because of tiredness. The symptoms that can occur are:

Intense burning pain - this may radiate to previously unaffected areas. Numbness, sensation disturbances on the skin - this may also radiate to previously unaffected areas.
Loss of control of the affected limb or another previously unaffected limb -
weakness, numbness.
An occasional cold or cool affected limb.
Swelling of the affected limb.
Headaches.
Nausea.
Insomnia.
Lethargy.
Abnormal Sweating.
Changes in skin texture.
Recurrent infections.
Depression.

CRPS TYPE 2 - (Causalgia). Is caused by a nerve or tissue injury that is affected by a known ongoing abnormality (a lesion, a tumour, an AVM) - the cause of the damage does not heal or go away. The symptoms are the same as
in Type 1 (RSD).

Who gets CRPS - anyone, any age, any sex, any race. What's is happening? - Ah - this is the problem - even the Medical profession is unsure as to exactly what occurs. What is currently believed is that the injured nerve starts behaving very erratically and begins to effect other totally healthy nerves. There is a condition known as 'Sympathetically Mediated Pain' - this means simply that healthy parts of the body's nervous system (the Autonomic Sympathetic Nervous System) are being abnormally activated and this actually make things worse! There are also other more complicated and alternative suggestions as to what is going on - so it is clear that, at least for the moment, we cannot be certain as to what is actually happening. However there is a lot of research going on and we must be hopeful that in the future it will be understood more.

The key difficulties at the moment are that the diagnosis is based almost entirely on the presenting symptoms alone - there is no definitive blood test, X-Ray or scan that can confirm CRPS. Indeed many traditional tests such as 'Nerve Conduction' will reveal no abnormalities as it is the microscopic nerves that are deranged - not the major nerves.
It has to be said that Doctors around the world are not in total agreement on what CRPS is, and many are not aware of it. Thus CRPS can be missed or overlooked. Alternatively - as indicated above - there are many names for it
despite attempts to bring under the term CRPS - Doctors may use other terms to describe or diagnose the syndrome - our son Sam has only ever had a formal diagnosis of "Chronic Pain Syndrome" although he has presented with
every major aspect of CRPS.

At the end of the day what it is called doesn't really matter - it is the symptoms that count!"
Dave Barton - Group Organiser of SKIP (Supporting Kids In Pain)