Spreading RSD - not sure what to do??
 

Hi all,

I originally started with CRPS II in my right arm, hand and shoulder due to a shoulder surgery gone bad. I am sure you all know the know of pain that is associated with it. Then I had a left sided hip surgery and after that, put my right foot in hot bath water and now my ankle hasn't stopped burning since. That was in December. Then, in the last 2 weeks, the incision on my left hip hurts and itches and the top of my left foot is burning too.

My pain doc is out of town for the next 3 weeks, my HMO tells me my PCP can see me in 3 weeks, I am feeling out of luck and not sure what to do. My right arm has been swelling, my right hand turning red, sometimes blue and blotchy white. It keeps me up all night; I am tired and running on empty.

Has anyone seen or felt this before? It is driving me crazy and I am getting very depressed.

Hi Dubious,

I am also pretty new here and wanted to give you some comfort. I feel bad you have to wait three weeks. It is most hard when you are in so much discomfort. It sounds like a really bad flare........is there an alternative doc you could go see. My Rsd is not in flare but I remember how painful and all the different symptoms that were happening were frightening and extremely painful. Do you have meds? I wish there was something I could do for you right now..........this most likely can't help you now but one thing i did to keep calm was learn self hypnosis. I went to a specialist in our town and it took three times @ 60$ ea. I still use it today. I used it every time I went for treatment as Hospitals make me crazy. It takes practice. Mostly I hope you can have some comfort now though. When I feel depressed I also do slow deep breaths difficult when in pain I know. Please take care and maybe in am you can call your clinic again. Don't be afraid to tell them you need to be seen.....preferably by an RSD/CRPS knowledge person. feeling bad can you go to your ER or urgent care facility?

Wishing your pain away,

Debbie

Hi,
 

I would try the ER as Debbie said.

Also call the Drs. office tomorrow and tell them you can't wait 3 weeks. Maybe you could see the PA in the office if your PCP is not available.

You might try taking baths in epsoms salts and also sleep with a heating pad on the area in pain.

I started out with RSD in my right arm and hand due to TOS surgery and Rotator cuff surgery. I also have it in my right foot up to my hip.

I can't use hot water for my bath. It just makes my pain worse. My water has to be just warm.

My RSD made my depression much worse. I have had it all my life but when I got RSD the depression just went off of the charts. I have been in councelling to help me deal with the pain. I have been hypnotised, I also was taught meditation.

It sounds like the RSD is spreading. It does spread into injuries or surgery areas. If you have to have anymore surgeries ask for a block before you have it. Nowadays the hospitals are pretty well sat up for blocks before surgeries.

I know you had said you had some blocks, can you see about getting more?

Hope you start feeling better soon.

Ada

I am SO sorry to hear that your RSD is spreading, Dubious and that you can't get to see any doctor for at least 3 weeks - that must be very frustrating and I guess I am "lucky" that my Doctor can usually get me in to see him within a day or so because of the severity of my symptoms and the fact that he works all the time, other than school holidays and even then they have someone to cover for my Doctor. It seems as though a lot of people are suffering from spreads at this time of year - I really hope that you start feeling better real soon and that you get some much-needed help and pain relief:hug:!

I really wish that I could help you and take your symptoms away but I know I can't unfortunately. Just know that I care about you and am here for you if you need to talk and DO understand some of what you are going through!!:hug:

I like everyone elses suggestion of going to the ER. If the pain is really bad, I would definitely go to the ER and see if they could give you anything to help with the pain - I know you probably don't like going but you shouldn't have to suffer from anymore pain than you already do!!!

I know it is really hard and painful but please try and move your affected limbs as much as possible. I'm sure you know this but it is extremely important to keep moving your RSD limbs as much as possible so that the circulation doesn't become any worse than it may already be. I have some exercises that my PT's gave me that you can do at home that might help if you would like me to send them to you.

Also, I KNOW it is really hard but please try and keep positive and get rid of any stressful situations that might be going off in your life right now. Stress is only going to make your pain and other symptoms worse.

Take care and know that I am thinking about you and if you need anything, I am here for you. Please keep us updated and I hope that you can get to see your Doctor and get some pain-relief real soon!!:hug:

hey dubious
i am so sorry that your rsd is horrible right now. like the others i would 1. go to Er 2. call and see if you can get in earlier or maybe the epsom salts in the bath will help. i try to make the water as hot as i can make and sit as long as i can .
i wish that there was something that i could :hug:
hang in there buddy !!!!

H Dubious
 

Hi Dubious,
My orginal injury site was my right shoulder. I developed RSD in the right shoulder and hand before the shoulder surgery. After the surgery I experienced the spread. I really inderstand where your are. I'm with the others, if you can go to the ER you may get some help. If not, then you may have to set a protocol or treatment for yourself to do the best you can until you see your doctor. I hope that is not the route you have to go. But, if you do, there are some things you can try that may or may not help.
1) limited activity to that limb....but not completely
2) try to stay calm and stay way from stressful situations
3) epsom baths, mentioned previously
4) breathing techniques and meditation
5) comedies and calming music
6) watch your diet (RSD Diet) and add extra antioxidants
7) get as much rest as you can, when you can

I don't know what meds you are on so I'll leave suggestions about that out.
I know its not much, but sometimes every little thing adds up. Please let us know how you are managing. I hope you feel better soon.
Di

Hi Dubious,
 

I do hope you are feeling somewhat better today.

Diana gave you some great ideals to try and help calm some of the pain.

Thank about going to the ER though if you can't get in to see your Dr. sooner.

Let us know how you are.

Ada

Dear Dubious,

Have you tried a systemic enzyme for inflammation & pain? I take serrapeptase now and I really missed it when I ran out a while ago.

I'm quite concerned about you and I sure hope you are able to find some ways to calm your mind body and spirit. Diana offered some great suggestions.

When it gets really bad I tell myself that I may have RSD but RSD doesn't have me! Hang in there and please let us know how you are doing.

MsL :hug:

Hi Dubious,

We are all worried for you and do hope you feel better........... Msl: where do you get serrapeptase enzyme? I might like to try and have on hand. I can't take traditional ansaids or aspirin. Your suggestions are all very familiar and good ones for sure.

Thank You, Debbie

Debbie

where do you get serrapeptase enzyme? I have never heard of this. Can you fill me in?

Hi Debbie,

http://en.wikipedia.org/wiki/Serrapeptase

The research on this is a bit questionable, and initially I was skeptical about it but after trying it I have decided to keep using it, for me it works.

I bought mine from a heath food store. The company that makes the one I use is called Enerex. I take the 90,000 UI, 3 x per day on an empty stomach. There are other products from different companies, some blend it with other enzymes. I picked this one because it is has a high potencty.

MsL

Dear Dubious -

I don't know whether or not your HMO would pick up an ER visit under the circumstances, you would have to check it your plan documents carefully.

Is there any way you can get through to the higher ups in the HMO without going through the (necessarily) time consuming process of a formal appeal?

Mike

Dear, Dubious,

If your up for it make 2 lists one with your HX and another for your SX. Please go to the ER if it's real rough. You are in my heart and prayers.

Much Love, Roz

Dear Dubious,

What is standing out to me is this.

the incision on my left hip hurts and itches



You could have a serious infection, from the surgery. With an injury you have a 25% infection rate anyhow. I know we haven't always seened eye to eye. But I believe in loving my neighbor, like myself.

Hang in their and please get help. Hugs, Roz

Oh Dubious.....How did I miss this thread?????? I am so sorry. :sorry:. You KNOW I know how you feel. You have got to find a way to reduce the stress in your life. There is NOTHING more important than your health. There were many good suggestions in this thread and I have sent you an email in addition. Please take care of yourself and know that we all care and know how you feel. :grouphug:
:trampoline: (Here.....that was from Bethany!!! :))

Helpful Hints for RSD
 

Hello all,

I have had RSD for many years unknowingly. I have RSD full body and am not able to walk much without assistance. I have found diet, meditation, laser treatments (erchonia)from my chiropractor,and Reiki treatments to be very helpful. I have had 13 nerve blocks and have been on many medications. Medications almost killed me! yes,the pain can be unbearable.

I have had a recent flareup and one of the thingsI changed was eating foods that contribute to the problem. I did very well on something called the body ecology diet. I also would recommend seeing a Naturepathic Doctor. I haven't had any luck with anything but holistic health. I was starting to improve tremendously until I loosened up my diet. it is importantto pay attention to things that work. Meditation and Reiki calm down the nervous system. It worked so well for me that I have obtained my Reiki certification which allows me to perform Reiki on myself as well as others.

Take care,
Boka

Welcome Boka
 

Hello.
Welcome and thanks for your contribution. I too have full body RSD. I have found that some of the same things you are using work for me. Diet and stress are big ones for me. Raw foods or juicing are extremely helpful. I will have to look up the ecology diet. Here a link for you all.
http://www.bodyecology.com/aboutbed.php
I haven't tried Reiki, though my therapist has suggested it. Maybe I should really look into.
The drugs really got to me after almost 20 years, so I too, began looking for alternatives. Although I still have to use them at times, I find the alternates can pull me through a long way. Even with HBOT, diet, and meditation I am not always painfree, but much better.
Congratulations on your Reiki Certifcation!
di

Dear Dubious,

I thought of you when I read the following excerpt from an article published in the latest issue of the Pain Monitor.

Dubious, it sounds like you have been through quite a bit with a couple of recent surgeries. I believe it is possible to break this pain cycle, the trick is in finding the right combination of treatments to interrupt the pain signals to give you a break. What this author is suggesting here is not as quick as just taking a pain pill, not that most of the pain pills even touch most RDS pain, but in the long run if one can learn how to retrain your brain it is very beneficial in managing rsd.

I hope you have been able to find some relief.

MsL