Reflex Sympathetic Dystrophy (RSD)

[baduff]

MY husband and I tried to celebrate our anniversary, mind you that is May 17, I felt so-so So we went to a Hibachi grill in our area and then we were gonna catch a movie at the drive in, this is the only way I can, the seats in a movie theatre hurt to much, So we went to dinner and went to the drive in paid and we were waiting, all of a sudden it felt like someone set me stomach on fire and it started making the weirdest noises, my spouse got me to the restroom but not in time, I got so violently ill excuse me but it was coming up 2 different ends. I guess I snapped because I started crying and shaking I appologised to my husband but it still SUCKS! My stomach is still not in the greatest shape my doctor agreed with the 4f's diet that someone on this site reccommended and I started it this week but it means giving up my coffee and moutain dew which I cut down but I still am getting a headache, my stomach feels a little better. I do not have a primary dr and wont have one till my medicare through SSD kicks in, I feel useless and lost. I know I need depression and aniexty meds but my PM dr can not precribe them. He put in for a referral which has been denied, I read of a similar situation on this forum, Why can not all the symptoms be treated, MY depression steadly gets worse and I know that it is not helping my pain level, my stress is off the chart, i meditate but that only helps so much, I am in online college for my Psychology degree but I wonder why, If I do not get my pain level in check and the RSD under control how am I gonna handle counseling someone with problems. I went to the pool with my husband and children because water works until I get out of it, and this lady sitting in a chair asked me what was wrong when I explained she looked at me and said that aint nothing try having arthritis, I wanted so bad to look at her and say sign me up I will trade ya. IS that wrong? I know being a M.A. Medical Assistant that there are so many ways to control arthritis, unlike RSD I have watched so many ppl who have it become old bitter B* and I really do not want to be like that. I envy ya'll who have found ways to control the pain by finding ways to deal. I just want to try to have a quality of life that I hear everyone talk about. I went to a superstore Monday night with my husband and they have the motorized carts, there were none 6 were out of order and the others were used by ppl who were to lazy to walk ( excuse me but I know this for a fact ppl who have weight issues and get tired) I said something to the manager and I was asked what I thought they should do and I said and Idea was to ask ppl who u could not tell were disabled for their BMV sheet issued when you get your handicap plate or the handicap placard, as far as RSD my dr gave me a little card that I carry in my wallet that tells ppl what I have and the symptoms, These carts are either used by the wrong ppl or they are broken down, I finally got a cart but it vibrated so much that I was in worse shape when I left. So if you have a problem with the handicap access in a store or a handicap stall who do you talk to? I have went in places that have handicap restoom stalls but the only thing that makes them this way is their size, the toliets are to the floor and their is not a bar to help you down and up and this stuff depresses me even further, I wondered why before I had RSD that the Handicap ppl were constantly upset, now being one I know, and ppl who do not need the stalls use them so your stuck in a little cramped stall that you kill yourself getting in and out of. I went the other day and traded my placard in for a handicap plate and my spouse was so upset, I aksed why and he said it seemed like the RSD was a permanent thing. See he hopes upon hope that the clouds will open up and a cure will be found or a new miracle inadvasive (no surgery) will be found, he hopes for us both, because my hope is dwindelling, the longer I have it and the worse my symptoms get the more I think Ill never have the great quailty of life that everyone said I should have. I am sorry to complain I am sure some of you are worse off I guess I'm just having a bad week I guess.
Barb

[Bussey]

Hello baduff,

First of all, never apologize for saying what is on your mind, when you post to this site! We are here to listen, and to help each other, in any way that we possibly can. I'm very sorry that you have been having such a difficult time of it lately. I would suggest, that you ask your pain management Dr., If going to the ER would be a good idea, because of your depression. I do know that people are sometimes criticized for going to the ER, when it doesn't appear to be an emergency situation. However, what may not seem to be an emergency to someone else, could most definitely be an emergency to you. If your PM Dr. agrees, hopefully, you will be given medication for your depression. Also, until you are able to get your Medicare, is there a free clinic in the area where you live? Again, some people think that you don't always get the best of care, at facilities such as that, but it is possible that you can be given medication for depression there, and some of the doctors are actually very competent.

I'm sorry that you had to deal with the person that made that comment about arthritis being so much worse than RSD. Sometimes, we have to take individuals such as that, with a grain of salt. They have absolutely no idea what they're talking about. Hopefully, restaurants and other facilities, will be more accommodating to individuals with physical challenges, one day soon. Perhaps, leaving a comment at facilities that are not very accommodating to individuals with physical challenges, will draw their attention to the fact, that they need to do things differently.

I hope that with the help of your doctors, you will be able to get your pain under control, or, at least, to a tolerable level.

Take care of yourself, and God bless you!

Bussey

[plumb bob]

According to the McGill Pain Index; Arthritis pain is rated at 18, a fracture at 19; cancer at 26, chronic back pain at 27 and RSDS is at 42!
This comes out of Canada, but I thought it was interesting. Don't most of us have a FEW of these?
I am so sorry to hear of your outing gone sour. It took some effort on your part to get to where an other adult just decides they GET to talk.
It took me a year of asking doc for a placard. "You don't want to be that guy?" I thought it would make things easier. Nope, still gotta walk. My hard time, is when ppl think they need to do something for me. Can I carry that item under one pound for you? No but a piggy-back would be lovely. For an outright attack on one's disposition, you did better than I!
Does the water hurt when it dries?

Carl

[puckster5]

barb

im sorry to read about your story. also, sorry it spoiled your anniversary.
i agree with bussy about what you may try. bussy, you seem to be a great person with lots of helpful advice, god bless you.
im from canada, i dont understand your medical system that well. and dont dont understand why your pain doc cant prescribe meds for you. sorry for my ignorance. i presume doctors are here to help their patients. they dont seem to be helping you???
dont get to angry with people remember people are afraid of the unknown. there are still a lot of wonderful people in the world. it just seems like sometimes you always mee t the bad when things are going wrong for yourself. your husband seems like he reallky cares.
you can read my story at informed decisions for stellite ganglion bloc in an earlier post.
keep your chin up and feel free to vent anytime
dave

[Bussey]

Hello Dave,

Thank you for your kind words. I definitely try to help others who are suffering with this terrible disease, as much as I possibly can. My RSD spread so rapidly, it was absolutely unfathomable. After seeing Dr. after Dr., and going through occupational therapy, as well as, physical therapy, and having test after test done, by the time I actually found out what was wrong with me, the usual treatments for RSD did not work for me. Thankfully, my pain medicine works for me, most of the time. I don't want anyone to end up the way that I have.

I always try to reach out to newly diagnosed individuals, because I realize how important it is, to be diagnosed in a very timely manner, as well as, receiving early treatment. Also, if I have experienced anything that someone has a question about, I try to share my story, in hopes of helping others to get through those very difficult times.

Thanks again Dave, your comments are very much appreciated.

I hope that you have been able to manage your pain sufficiently.

Take care of yourself, and God bless!

Bussey

[puckster5]

hi bussy

thanks for your response.
i too would like to help anyway i can. like i said, i dont understand your system all that well. here in canada, well my doctors anyway, are wonderful and are trying everything they can to help me. so far my rsd hasent spread and for the pain i have good days and bad. hopefully more good.

i have one question that i would like to propose to you. i would like to know some of the signs and symptoms of the rsd speading. try your best to explain, i realize everyone is different and the signs may be different for everyone. i know your not an expert, but i thought maybe some of your experiences might help myself to realize if mine might be moving. like you said the quicker the better.

i hope you will read my story at the forum about stellite ganglion nerve blocks.

dave

[Bussey]

Hello Dave,

I hope that your pain level is low to none today. I read about your experiences with the stellate ganglion blocks. I'm sorry that they were not helpful to you, but I am glad that you receive, at least, some relief, from the other block. It sounds like you have wonderful doctors, who are knowledgeable as it pertains to RSD. That's great! The fact that your doctors are working together, is a definite plus.

You had a question about RSD spreading. According to research, there are three main patterns of spread. 1. Contiguous spread-this involves the gradual enlargement of the affected area.
2. Independent spread-signs and symptoms appear at distance sites, not adjacent to the initial site of the injury. For example, your RSD symptoms may have started in your hand, but you also develop RSD symptoms in your foot. 3. Mirror image spread-signs and symptoms appear in the same area on the opposite limb.

Those are the names of the different ways that RSD can spread. However, it is impossible to know which pattern of spread you may experience, or, if the RSD will spread at all. Naturally, I would definitely hope that your RSD would not spread at all! Unfortunately, there is just no way to tell. Figuratively speaking, RSD has a mind of its own.

As you probably already know, there are several symptoms, that are characteristic of RSD. You don't have to have all of the symptoms, to be diagnosed with RSD. Some of the symptoms of RSD are edema, or extreme swelling, discoloration of the limb, sweating, excruciating pain, a cool or cold feeling in the limb, excessive growth of the nails, hypersensitivity, excessive hair growth on the affected limb, debilitation, and the affected limb can become very shiny, among other symptoms. If you begin to experience any symptoms related to RSD, in a different area of your body or limb, I would suggest that you see your Dr. as soon as possible.

As for me personally, when my symptoms began in my right hand, I experienced every symptom that I listed above. However, when the RSD began to spread, the first identifiable symptom of RSD, was that the limb would become shiny. That is what happened when the RSD spread to my right arm, and when it spread to my right leg. The pain, swelling, and debilitation, followed. As you said, everyone is different.

If you have any other questions, feel free to ask. I hope this information has been helpful to you. Hopefully, your RSD symptoms will not spread to any other areas of your body!

You will be in my thoughts and prayers. Take care of yourself.

Bussey

[puckster5]

hi bussey

thanks for sharing that information. i more i can learn the better.
i too hope your having a no pain day.
anymore questions or comments will always be useful. feel free to write any time.
dave