I’m still on a desperate search to find a doctor in my area who can help me with my recent CRPS DX. I’ve left voicemails and emails for several pain management specialists all over town. I am hopeful that someone will get back with me after the holidays.

I’m wondering if anyone has had a similar experience to mine with the type of pain and sensations they feel. I appreciate you taking the time to look at my question and share your experience. I know no one on this site is medically qualified to tell me if what I am experiencing is RSD related or not - and that no two people seem to be affected by RSD the same way. I’m just curious if an achy feeling is custom with RSD (or if it’s always simply the shooting burning nerve sensations)?

Just a little background: I believe I’ve had crps my entire life. I’ve suffered with pain and swelling in my ankles and legs since I was a kid and injured them playing soccer. The pain and burning sensations in my legs increased after both the birth of my son and a fall on my knee in 1998. After the fall, my knee continued to swell and would not heal. I was told by an ortho that sometimes they can’t explain things and don’t even bother to try…then he shook my hand and escorted me from his office. Not long after the pain moved to my hip and was so intense I could barely walk. I was referred to a rheumatologist (she scratched her head and chalked it up to a lupus dx I was given when I was 12). She later told me that she really didn’t know what was wrong with me…and all she knew to do was pray for me. All of this eventually subsided – although it has come back off and on in waves over the years. Each time I’ve gone to see if it maybe lupus related…and each time the test have come back negative.

I suffered a sprain in my left wrist this past October (this is what led to my RSD diagnoses). It seems the wrist injury has caused the nerve pain in my leg to increase (and I now have the same pain in both legs). It’s now to the point where it is again difficult to walk without pain. However, it’s not always the burning and shooting pain I associate with the nerve – most times it just feels very achy. Yesterday was fun (not)…I had the achy feeling in addition to alternating burning/shooting pain, muscle spasms, and the feeling of things crawling under my skin. (This seems to be spreading throughout by back as well).

I find that when the pain in my wrist (and now arm and shoulder) increases – so does the pain in my legs. I assume this is normal because my whole nervous system is just over-firing. (?)

Again, thank you for taking the time to read my post. I look forward to learning more about your experiences. I’ve found this site to be extremely helpful and am very glad I’ve found this site.

I get a deep aching pain in the entire arm. That pain is constant an unrelenting. I also have other types of pain in the arm as well, however they aren't constant and m PMD has had a little success with the shock type pains and some of the burning pain.

I describe the aching as if Hercules is twisting my arm like a wet towel while a 400lb woman in stilettos is standing on the palm of my hand.

sam
I don't know where you live, but hopefully you are right that after the holidays the dr.'s you have contacted will start to return your calls.

As far as rsd or not, like you said we are all different. There use to be stages of rsd but they found (those who created the stages) that some of us had symptoms from each stage, but did not have all of them from just one. example. My foot has been black, blue and red for 3 years, with moderate swelling. My toenails turned an ugly dark yellow and now they are normal color again.
A key factor is having sensitivity to touch.

THAT'S IT!!! I know exactly what you're saying!!

Thank you for the reply..it is very helpful to know I'm not alone in how I feel.

Thanks! I'm in Colorado Springs, CO.

I most definitely and sensitive to touch. I have a little 6 pound toy fox terrier. He put his paw on my leg yesterday...and I screamed out in pain. It felt as though his little tiny paws were Freddy Krueger hands with razor blades piercing my leg! It was so painful that I checked to see if maybe I neglected to trim his nails -- I hadn't...they are short and smooth. (Even if they had been sharp, the pain was totally disproportionate to what I should have experienced).

Also, the other night my shirt sleeve touching my arm caused unbelievable pain. I was told on an earlier post to not protect those areas...and my doctor wanted me touching them as much as possible. It's very difficult to do.

Hi Sam, So sorry for your symptoms you are having. So you had a RSD diagnosis in Oct? sensitivity to touch was one of the symptoms I had. I've had RSD 16 years now. Was diagnosed 11 years ago. I had an an excellent orthopedic dr. and his physical therapy group helped me a lot. My left hand was frozen solid like a board with no movement and extremely painful and sensitive to touch. A tens unit helped. But what helped most was the pt treatments 3 times a week. plus they had me do my own 7 days a week to desensitize my hand.. I got 6-7 plastic containers. Put different things into the containers. like cotton balls, coffee grounds, popcorn kernals, sugar, beans. then run my fingers thru the containers to feel the different textures. Doing that dailey desensitizes the hand. I don't remember how long it took, but have no sensitivity now. I still have the burning, pins an needles in feet and legs-have full body rsd. For years had electric shocks and uncontrolled tremors and jerks, but have years of neurotin and later lyrica those are gone. Still have BAD dailey headaches - body heat or cold- blood pressure issues high and low, heart rate-high and low, If you look up autonomic nervous system, it will help you understand rsd better. It is a disregulation of the sympathetic nervous system, parasympathetic nervous system, vegas nerve. the website, www.rsdrx.com has a lot of good information under puzzles there are 146 questions answered by a rsd specialist. he was in florida and I almost went there but didn't. I believe he is retired now. but in information under puzzles is very good.
Hope this helps and hope you get a good knowledgable dr. I underwent at least 150 pt treatments for my original rsd in shoulder for frozen shoulder -first the left one then moved to the right. Then 4 years later had injury to left hand. It was after left hand injury that was diagnosed with rsd. It used to sometimes be called hand shoulder syndrome.
The RSDSA website is also good. You can go to that site and put in your town and it will tell you the closest support group. They are very helpful as the members already have good rsd drs. in the area. Just an idea. sincerely, loretta

Loretta,

Thank you so much for sharing your story. I will check out the sites you suggested. I was doing OT 2x a week for a 1.5 months before we realized I have RSD (the course of treatment they were doing seemed to make things worse). I was unable to move my fingers for 2.5 months. I went to a new ortho (when the other insisted there was nothing wrong with me) and he is the one to give me the RSD Dx. Unfortunately, that was the extent of his knowledge...and he quickly told me he would not be able to assist with my treatment.

He put me on gabapentin and I was able to fully move my fingers again within a few days (the pain started to subside almost immediately). However, my hand broke out in a rash and the ortho was concerned that I was having a reaction to the med and pulled me off. My pain has increased and spread since then.

I am interested to learn more about the nervous system...so I appreciate you pointing me in the right direction as to where to start researching.

Thanks again,
Sam

It definitely helps to know others understand your pain. I came up with that explanation when trying to explain to a friend the pain I was having.

I agree with the sensitivity exercises. I live alone and aside from the therapist having me do sensitivity exercises (originally for my surgery scar) I was more or less forced to do things that caused pain (sensitivity) because there was no one else here to do things. I think that was the major thing that helped with my sensitivity. Petting my animals, doing dishes, opening door handles, folding laundry...all day to day stuff that is very difficult to do 1 handed. So even though it hurt I used the hand with the RSD.

I haven't been on here in over 2 years, but I have had CRPS for 17 years. My daughter was diagnosed with RSD in 1987; my son was diagnosed with RSD in 2000. Even though the three of us have had some of the same types of pain, we have also had some differences in our symptoms. That is one of the most perplexing things about CRPS is that it doesn't present the same symptoms in everyone it affects.
I was injured in a car accident in my right foot, and it is nearly always sensitive to the touch. The pain I experience there is a strong achy sensation. It spreads up my leg in a strong achy sensation. I do not experience the burning sensation so many people describe, but I have the edema, mottling, extreme cold temperature change.
My right arm was injured just 4 years ago in a fall. I developed CRPS symptoms almost immediately. However, it itches something fierce, has shooting, electric shock pains and "bee sting" sensations. And yes, it swells.
I hope you find a good Pain Management dr. that is knowledgeable about CRPS. This is a good place for information, also, as well as the support all of us need.

I have the deep aching all the time like you. I usually describe it to doctors as an intense pain. The burning is not all the time, thankfully, but still quite often. Then of course I have the allodynia (sensitivity to touch). Then there's inflammation pain from swelling, and pain from the areas being too hot or too cold.

But that deep aching or intense pain is what's there the most, as it is ALWAYS there.