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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index

Hi dayton (love the name. Reminds me of a ton of days. Can you tell then that I dislike nights ;) Nights are more difficult with CRPS for me)

Morning Dayton and hubby,

CRPS is really unknown in how it actually begins. There is alot of good reading out there on the net and if you have difficulty I can help you through it.

One thing to note in all my readings was that the degree of pain is unrelenting (chronic) in CRPS. But there are people that do same there pain can range from minimal to 7-9 on a pain scale of 10.
A few doctors believe that this disorder is more wide spread than what research indicates and because their pain is minimal they are not classified (nor tx) for CRPS.

There are many different pain syndromes. The only way if the doctor is not positive of the synptoms is to do the block and see if the pain goes away. If it is CRPS and treated early (within 3-6 months) this is known to be the only time where the word 'cure' can be used in this disorder.

1) Dayton, is you foot hurting you to begin with or are you saying that it doesn't increase in pain?
I have always been able to touch on own CRPS areas. Others can't. I know exactly where and how to touch them.

CRPS is a 'regional disease.' It starts in one precise area or spot. It can stay just there too or it can spread to other areas.

The shocks one feels in this illness is supposedly vascular system in the CRPS area spasming. Pressure in the area of the CRPS spot can bring on the pain. It is mostly spontanous, movement can do it as well as being still for too long.

If you go to your search button and type in 'RSD + morton's neuroma' you will find info on this. Do not go into any advertizement sites. One doctor I like his easy to read puzzles and is very good for learning for lay people. Another is Swartz who describes the Morton's too. Check them out though.

3) Stopping your hormones can cause a return of the symptoms you had prior to taking them. I've not heard of the muscle spasms in the leg unless you had this before.
A doctor playing devils advocate may check your calcium levels and do other lab tests to see if there is another cause for this. If everything is normal and CRPS symptoms are present, along with a positive block then CRPS is dx.

4) Chronic pain and especially when you don't know the cause of it is so disturbing to the person experiencing it and to the family. One thing to know is if it is CRPS (if it is this) it can go into remission.
Anxiety is totally understandable in anyone's position when they don't have answers to their questions. But the stress it causes aggrevates illnesses like CRPS or FMS and always makes things worse. Its really easy to tell you to stay calm but I know how hard it is to do it too. Its important though. The stress on the body will only make you feel more ill as you experienced already.
I always suggest people take up a relaxation program. Doesn't even hurt the hubby's to take it with you. I went out and bought relaxation tapes, plan a part of my day to listening to them, and tell myself there is little in this world that can upset me anymore ;)
Phernergan(or Gravol for Canadians) can affect what I call a virgin system like that. It does it to me too.
This is what some people use some times as a sleep aid as well. Maybe not that much though ;)

5)Dayton, stress, is known as the number one leading cause of death in the US. You can see how negetively it affects the body. When people live in that state for long periods of time, it wears the body out.

Many doctors support the theory that people are in this state of stress when an injury occured, than CRPS symptoms occur. No one knows for sure because they often don't remember how they felt by the time they are in the pm office.

My body has been so wired that my hubby swears I seizured in my sleep. ??? Haven't done it again by I know its possible too.

If you read the doctors I suggested above, you will find that many of them are thinking along the lines that FMS(Fibro) is very much like CRPS but it affects the muscles verus the nervous system. All of the syndromes you have listed as one's that can come with CRPS as well. Remember it is just a title or diagnosis. What the most important thing is how you are feeling. And from the sounds of it, not well.

You need to learn to calm your nervous system down. There are tapes, books, TV programs, classes, you name it, all focused to learning ways to calm stress. As I said before it affects so many people.

Do you like your job? This question is put in such a way that if you don't, you will find it many things that lead to stress. People that love their job do not find their job stressful or they deal with the stress in a positive way. This is where you do soul searching to answer your question.

6) This is your hubby that was shot?
He may be very interested in reading about the Civil War surgeon, S W Mitchell, and how the soldiers got this. Gun shots to nerve injuries to CRPS. In fact, if he has all the symptoms of this illness he may have it so mild and not even be aware of it. He wouldn't be the first one on the net that learned about it this way.
Dayton, nerve injury that leads to symptoms of CRPS only tell the doctor the injury. It then places the person into the category of Type 2 CRPS verus Type 1.

If it was nerve damage only, it does not lead to other symptoms or syndromes such as what happens with CRPS. The one important point if it is CRPS is that tx cannot be ignored. It really does complicate the entire picture for the doctors if the patient has a multiple of other problems that are closely related to CRPS but this before the reason why the block is vital as an aid in dx the problem.
I have Type 2 CRPS. The nerve impengment does not bother me at rest. The CRPS pain, tremors, electrical pain does. It wakes me up in deep sleep as well.

7) There are some doctors that believe FMS(Fibro) is a variation of CRPS, just as is say MS and other neurological pain syndromes are a variation of CRPS. CRPS is SNS (actually central nervous system) related where FMS is more muscular but they have so much in common.
There is a high coincidents in the number of people that have CRPS and come down with FMS as there are the # of people that have FMS and come down with CRPS.
Personally, I would hate to see that your opportunity to have the blocks is passed if they could help you early if it is CRPS.
The dx of CRPS does take awhile to get. It is through process of elimination and the blocks that the doctor finalizes his decision.

I have alot of opinions, s you all can probably tell by now about this disorder ;) , but I know that once we deal with the skock of dx,tx and all else that we have to endure, a life of sorts is possible with CRPS.
Having spent a couple years doing the bed routine, then slowly progressing to being able to use a type writter, I can now go for short outings, a dinner date out ex. Baby steps back to this point though.
Write down you questions for your doctor. Do as much reading about this disorder as you can over the weekend. I cannot emphazise enough in how important learning as much as one can on the illness they have as being the key to success in their life, be it any disorder.

Good luck on Monday. And I do hope it is not CRPS!

:) Shaman

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