Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 07-05-2016, 01:24 AM #1
JanLynn JanLynn is offline
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Join Date: Jul 2016
Posts: 6
8 yr Member
JanLynn JanLynn is offline
Junior Member
 
Join Date: Jul 2016
Posts: 6
8 yr Member
Confused Crps

Please excuse me if I ramble but I am exhausted and frustrated.

Over 2 years ago (when I was 44), I was hit by a Jeep while crossing a parking lot (shortly after 1PM). For some reason I remember everything up until the Jeep hit me, including the pain which I felt immediately, but then everything is fuzzy and I can't tell you what happened really until I was being released from the hospital at 5:30 PM that same day. However, my memory doesn't return to normal for several days after the accident, it is spotty.

Now this is what a witness told me about the accident, I was hit the the Jeep and doubled over, I did not loose consciousness and I was complaining greatly of left sided pain immediately. The person who was driving the Jeep got out and grabbed and attempted to straightened me up and tried to get me into the drivers side of the Jeep but I was crying in pain. The witness tried to get me away from the driver and into a nearby clinic.

I had X-rays and nothing was broken and I was given percocets and told to go home. I thought maybe I was just suffering from bruises and general soreness - but, I seemed to be in a lot of pain from day one, pain which seem for the first month to increase dramatically. I was told it was soft tissue and everything would be fine in a few days, then in a few months. However, things got worse not better as the days went on. Within the first month when I started Physio, the people there noticed that my left hand was a different temperature than the right one.

All of the pain I had since the day of the accident was on the left side and in my back. I had a mixing of throbbing, burning, aching pains and numbness and tingling as well. Sometimes it's like ants running over my body but they are on fire.

I have been tried on so many meds to help but I seem to end up having a flu or flu-like symptoms and then I react to the meds with itching, vomitting and a whole list of different reactions. The doctors remove them from the list and add a new one. Even with all this I never get lower than 6.5 out of 10 on the pain scale.

I have such a litany of symptoms such as:
- pain
- color changes
- waxy look of the affected hand and foot
- temperature differences
- twitching of the left hand
- dropping things unexpectedly with the left hand
- falling or having my legs come out from under me
- weird sweating
- inability to sleep
- pain when someone or something including water touches the left side
- Nausea
- Itchiness
- Head aches only on the left side
- confusion
- I have broken 3 teeth now due to biting down with the pain

The pain doctors say CRPS Type 1 presenting sometimes. I have a hard time judging the temp around me anymore. I sweat on the left side when I shouldn't be, and when I am super hot and in a hot environment I may not sweat at all on the left side. In the last week I have woken up to vision changes, not a gradual thing, just woke up to things being fuzzy.

But I am increasing in pain and now I am reacting to everything from meds to face cream (the same one I have used for years). My GP thinks it is all in my head, my pain doctors say it is normal with the CRPS symptoms and my counselor says it is all because of the death of my son. I am starting to think I am nuts.

I have tried from what they say everything so far, with the exception of medical marijuana (they are starting that in the next month or so I am told) and I am currently using Fentanyl 50 micrograms (I have to wait a day in, sometimes more (which causes a great increase in the pain) between applying the 3 day patches as I have been breaking out and reacting in other ways to those as well, I am and have been using several things to manage my pain:
- Mindfullness
- Linament (especially after a shower or bath when the pores are open)
- Exercise
- Distraction
- Relaxation and breathing
- Heat
- Percocets, NSaids, Robax
- Hot water
- Qi Gong

However, I now have to take antihistamines in order to be able to take the Percocets, NSaids and Robax and I cannot use liniment or Tiger Balm or any patches (hot/Cold, liniment, etc) as well cold makes things much worse.

Does anyone else have an increase in intolerances/allergies to normal things as the pain level increases?

Also, any advice would be greatly appreciated - I am at my wits end - I still don't have a diagnosis - they just keep saying it is CRPS Type 1 presenting at this time, due to this or that - usually I am pushing too hard they say, or the tests the insurance company has put me through has spiked a pain increase, and that has caused this. When I ask if that is what this unending pain is they say "well we aren't sure yet - it takes a long time to get a diagnosis".

Has anyone found any lifestyle, diet or anything that has helped?

Thank you in advance - I appreciate any help
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