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    Old 12-18-2008, 05:34 PM   #1
    walleye77
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    RSD so many questions

    With everything I have read on rsd and Doctors you can't find to help treat this disease I get more confused each day. I had 4 doctors tell me I have it, one neuro that said she treated patients with rsd then 2nd appt said I would be better served with pain management. The neuro I have now is questioning if I really have it as he said the feet weren't cold this visit. Then the god awful sweating which I thought was female related until reading some posts.
    So do you have to have discoloration (blue) to truely have rsd? The hot, red swelling aching foot is what I get on a daily basis. Tender to touch on some days, then others it fine. The smooth skin, I thought it was because the foot had been in a cast for 3 weeks back in july, Its still shiney and smooth. The stiffness when you get up and walk on it. the other one doesn't feel stiff. So you can see I have many questions, any suggestions would be appreciated.

     
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    Old 12-18-2008, 09:07 PM   #2
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    Re: RSD so many questions

    From the symptoms that you mentioned that you have, I would say you have RSD. The reason I say this is because those are some of the very same symptoms that I suffer from.
    My RSD started out in my right foot after I had bunion surgery a little over three years ago. Now it has spread up to my knee, over to the left foot and up to that knee. And just recently it has spread to both of my wrists.
    I have extreme swelling in my right leg and foot. The left foot does swell but not as bad.
    I am in pain every minute of everyday. It's just that some days are a lot worse. So much so that I am just not able to move around at all. Those yucky, yucky days effect me on the average two to three times a week. Oh yeah, how could I forget the sweats! The lovely sweats that I get so many times a day I cannot count them. I also have the red hot feelings in my feet and legs.
    I do not however suffer from my legs or feet being cold. Sometimes they are shiny but that was happening more when I was first diagnosed with it.
    The purple coloring was also more prevalent in the beginning. Not that my feet do not ever turn colors, just not as much.
    How long have you had RSD? Are you seeing any one of those four doctors consistently now? Are you able to work yet? Not me I was never able to go back to work after my bunion surgery. Luckily have been approved for SSDI on October 9 of this year
    The tenderness is still with me. And I can't tell if that isn't as bad or if I am just getting used to it. I know one thing for sure though and that is I have not gotten used to the pain levels!
    Let me know if you have any other questions.
    Take Care,
    Chris

     
    Old 12-19-2008, 04:58 AM   #3
    Michelle94
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    Re: RSD so many questions

    Walleye77,
    If you have four drs who say you have RSD then I am sure you do.. Each yr, there are more and more drs becoming aware of this.. So don't let it scare you when you hear that people can't find drs.. Some parts of the US have drs who have a lot more knowledge of it...
    As for what dr to go to.. I went to A neuro.. Dr Schwartzman.(big on RSD) and then in between I would see the PM dr.. The PM dr was like bandaide.. He treated my pain while the Neuro gave me the treatments that I have suggested in other postings such as the lidocaine and ketamine...
    I know not everyone is able to get these treatments, but they are the best treatments out there right now... I think the most important thing right now is to get your pain a little under control.. That will help with your mental state also and calm all the confusion down.. Helping your mental state will calm down the RSD also.. Getting the proper sleep will too.. This is why I say you need the right cocktail of meds.. Thats first off.. In the mean time.. I would talk to both drs.. see what they offer.. Maybe they both can work together. Thats what my drs do.. Its important if you are going to go to both for them to have good communication at all times.. It doesn't mean it has to be by phone.. Just so they send all records of treatments to each other...
    Michelle

     
    Old 12-19-2008, 08:39 AM   #4
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    Re: RSD so many questions

    Michelle, It seems like you know a lot about RSD. I have a question for you. I have read about RSD and hair growth, have you heard of anyone's hair go from straight, bone straight to curly? Also, have you heard of anyone developing facial hair. It's embarrassing to mention, but I want to know if it could be from the RSD. I have had my blood work done recently and my hormone levels are ok, and that is the only thing that I thought would contribute to facial hair. Thank God I am a blonde with fine hair. LOL.

    I am so glad to hear that you are back to work and feeling so good. It shows that there is hope if you have the right doctors. I have gone to a new neurologist a couple of weeks ago, and he told me that I had all the symptoms of RDS, but when he examined me, I didn't scream out in pain when he touched my feet, so that confused him. Luckily for me, I was having a good day at the time of the visit. It was later when I could feel everywhere he touched and performed the sensory checks on my numb feet, it hurt very much so. He sent me to a Vascular doctor to check to see if there was anything in that direction which is causing the swelling and discoloration of my feet. I will then return to him when the Vascular doctor has finished with me. He will then do an EMG. I hope that this is the usual form of treatment. With your knowledge, I am hoping that you can give me some answers and my questions may help others also.

    My RSD has moved to my fingertips and the palms of my hands are red, like a lot of others have mentioned. I am impatient for my waiting on doctors.

    Thank you. Jane

     
    Old 12-19-2008, 04:40 PM   #5
    walleye77
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    Re: RSD so many questions

    Thanks everyone. To let you know I have had the EMG. The only nerve change is coming from the L5. Everything else turned out good. I also have been tested for blood vessel blockages have none. Tested for arthritis don't have that either. I got this RSD from surgery in April this year to remove a bone chip in my left foot. My foot is still numb from the little toe to the ankle, and from time to time the skin burns/tinlges even the toes get it. I have a hard time touching it but was told to use a brush to stimulate the nerves back. I just cringe thru it. Somedays I can't stand shoes and socks but since I have a fulltime job I suffer usually taking an oxcontin to rid myself of pain.I am still healing from a strees fracture that doesn't want to heal. Using a bone stimulator as the body is not making bone in the area in question.I was just told by an ortho last Monday that he believes since there is still pain along with a high arch he may have to reconstruct the foot so I can walk without pain. You talk about scarred, thats me!!!! more so for the RSD getting worse. Besides the oxycotin, I am trying a lidederm patch to the area 12 hr on then 12 off. Have tried Lyrica what a wonder pain reliever, but I got facial swelling and tons of weight gain so I can't take that one. Then tried Amitriptline, this one you sleep like a baby ALL night what a godsend, but again side effect it makes the heart race, not good. I know one has to try different drugs as we are all built differently. I look forward to hearing from all the kind persons suffering with RSD and helping each other.

     
    Old 12-19-2008, 06:55 PM   #6
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    Re: RSD so many questions

    You know it's funny. I was just looking in the mirror the other day and I said to myself, I said, "Self, you look like you have allot more facial hair than you have ever had!"
    I never even thought that it could be caused from the RSD. I don't know why I never thought that. Because I have had other strange things happen to me that was from the RSD.
    I just thought that since I am 49 maybe that was the reason why or perhaps because I had a hysterectomy four years ago.
    But WOW, I am just blown away from this and yet I shouldn't be should I?
    Has anyone else had facial hair start because of the RSD? Has any doctor tell you it was from the RSD?
    Jeez, what else can happen to us? Isn't it enough we have to suffer in pain everyday. Now we have to look like we are in the process of a sex change?!?! Ha!! Ha!!
    My husband has been very patient and supportive throughout this whole journey, but I don't think he will be very understanding of this! Can't wait to tell him this one.
    I'm just trying to be funny because without humor I would cry. I don't want to have facial hair. That to me is as bad as my weight gain. Oh well, just like everything else about RSD, we suck it up.
    Chris

     
    Old 12-19-2008, 07:25 PM   #7
    Michelle94
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    Re: RSD so many questions

    hotfeet,
    The answer to your question about hair growth etc... Yes it is all from the RSD.. RSD causes inflammatory/trophic changes such as
    birttle nails, which can grow faster or slower the others
    hair ma grow faster and/or curlier on the affected area
    increased sweating
    edema
    smooth, glossy appearance to skin
    At first my head head feel out big time.. this was before I was even dx.. and my nails they grew like weeds. still do.. My hair did change to a different texture.. I already have curly hair so.. I do get facial hair.. this is weird to say but its almost like pubic hair my chin, eyebrows.. and it is curly..

    I did not have the sensitivity to touch.. you could rub my arms and legs etc... It did not hurt.. but if I dropped a comb on my foot.. Wow I went through the roof in pain.. After about two yrs.. I started having the sensitivity from the fan, vibration in a car from the base of a radio or motor.. Everyone is so different.. I guess this is why its so hard to dx..
    I went through the same thing going to the drs.. when I would go I wasn't showing any signs.. So I decided to take pictures during my flare ups.. That helped them out so much.. Not only that it helped in my lawsuit big time... As for the treatments.. I went through the same process.. I had the MRI, Catscan, blood work to rule out lupus , arthritis etc, I had thermo testing, EMG, I've had four of them done.. two yrs of PT, blocks.. nothing helped accept the right cocktail of meds and the lidocaine infusions..
    I do think you going down the right road.. THey have to rule out everything else first.. In all my drs reports reading them now.. They all had written suspected RSD.. none of them mentioned it to me until all the test were done.. This is really the only way they can dx you. That and history...
    So hang in there.. I think your going down the right road..
    Thank you for trusting me.. I am only going from what I went through and have learned in the past 8 yrs.. Please hang in there.. I know its hard.. Its one of the hardest things I ever went through.. It can destroy you mentally but only if you let it.. Stay strong
    Michelle

     
    Old 12-20-2008, 12:32 AM   #8
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    Re: RSD so many questions

    Wow ! I am so relieved (well, you know what I mean) to read that others have more facial hair since being diagnosed with RSD.
    Sometimes my face burns (my tongue, the roof of my mouth, my nose!! although my rsd is in my left foot and leg and now in my right foot and leg with the burning...)
    and I noticed more facial hair above my upper lip and also my eyebrow hairs looked so much longer and more profuse. So I guess I'm not the only one!! I have to use one of those little groomer hair removers to keep my upper lip smooth. What's next, a Remington???
    Chicubs, thanks for your humor, I , too, have to learn to find humor in all of this because I am trying to keep sane !!
    I have a question about going to the dentist...I have to go to the dentist for my cleaning, but I am afraid to go...when they probe the gums, they sometimes bleed and then when they clean the teeth, it is some times 'invasive' Is it OK to go to the dentist with RSD for a cleaning or can this cause it to spread???

    Also, is it OK to sit in a hot tub or will this cause a major flare-up??
    Thank god for this message board and for all of you!!
    many, Many hugs,
    Tigerlily

     
    Old 12-20-2008, 07:38 PM   #9
    Gaollan
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    Re: RSD so many questions

    Quote:
    I have a question about going to the dentist...I have to go to the dentist for my cleaning, but I am afraid to go...when they probe the gums, they sometimes bleed and then when they clean the teeth, it is some times 'invasive' Is it OK to go to the dentist with RSD for a cleaning or can this cause it to spread???

    Also, is it OK to sit in a hot tub or will this cause a major flare-up??
    Thank god for this message board and for all of you!!
    many, Many hugs,
    Tigerlily
    On the dentist thing, you should be ok for cleanings. I've not heard of anyone having spread from a cleaning. If you're concerned and it hurts for them to clean your teeth in a spot or two, maybe they can rub on some numbing stuff, on the gums to make it easier.

    I haven't gotten in a hot tub, but my bath water is like a hot tub! LOL I make it HOT!! It feels so good for me and hasn't ever caused a flare. I say if it feels good then do it. If you don't deal well with heat then don't do it or at the very least limit your time. Those of us with cold rsd, ie the limbs being cold to the touch, it's the cold that will have us flaring and hurting more while heat feels good. Of course there's no rules but I've not heard from many who do well with the cold and have cold rsd. Hot or warm rsd likes cold but even there it can cause pain too.

    You have to go with what feels good for you.

    Hugs,

    Karen

     
    Old 12-20-2008, 11:42 PM   #10
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    Re: RSD so many questions

    Thanks, Gaollan,
    I guess I'll call up my dentist and let him know of the changes in my life...I expect I'll have to explain what RSD is to him and his assistants..It would be so helpful if RSD were more well-known as a condition..it has to be explained to everyone, friends, family and even medical personnel. by the way, I don't know if I have cold or hot RSD..my foot and lower leg get ice cold, espcecially at night, but also the burn pain is there at the same time..so I guess this is hot/cold rsd?
    I wish it would go away..I can't give up
    Hugs,
    Tigerlily

     
    Old 12-21-2008, 07:55 AM   #11
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    Re: RSD so many questions

    Hi

    I understand when you say about dentists not knowing about RSD. It is also doctors here. I broke my big toe in the summer and had to go to the hospital, it was a nightmare, I saw the triage nurse who told me I was aggressive, to which I replied if you experienced the pain I am going through you would be a bit p*****d if someone keep poking at your foot say "I cant really tell where the pain is it seems to be everywhere" Then I had to go through the whole thing again when I had my foot xrayed - that was fun and then again to someone else who told me I had a broken toe, and to go to the fracture clinic on monday. After sitting there for 3 hours I saw a nice doctor who said "Im not touching it, theres nothing I can do, use this shoe it might help" and off I went. So I really do understand how you feel.

    Hope you get on ok.

    Hugs Jools
    xx

     
    Old 12-21-2008, 09:51 PM   #12
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    Re: RSD so many questions

    Tigerlily, that would be cold rsd just like me. (Hey I rhymed! LOL)

    The cold or hot part has nothing to do with the burn of rsd itself. It only refers to the temp of the skin. If it feels cold then, cold rsd. If it's hot or very warm to the touch, then hot rsd. :-)

    I conducted a survey in the first year after I got rsd and cold rsd is what the majority of us live with. Hot rsd is a minority. If you've ever read the rsd guidelines for dxing rsd, it says rsd starts off with hot skin and goes to cold later on. It's the reason I hate those "guidelines" to begin with. So many of us start with cold skin and stay with cold skin and hence have cold rsd. A few have it hot and it either stays that way or may actually go chillier later on.

    Hugs,

    Karen

     
    Old 12-22-2008, 04:31 PM   #13
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    Re: RSD so many questions

    So if I understand what most of you are saying is you can have both hot or cold. For the ones that get the cold do you get swelling on the effect limb? My foot is usually cold to the touch most days but I get the hot then burning with tons of swelling. I find the longer I stand on the foot the more the swelling it does not matter if its hot or cold. Then if you rest the foot to long when getting up it becomes stiff and difficult to walk on. This is one disease no one should have. I was told that because I don't have the discoloring I may not have rsd, but so far everything else is there. Who to believe???
    Gentle hugs to all, hope your holidays are filled with new memories and no pain.

     
    Old 12-22-2008, 05:57 PM   #14
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    Re: RSD so many questions

    Swelling is just an rsd thing. Most of us have or have had swelling at some point. In the beginning my foot/leg and knee swelled to twice it's normal size. All I had to do was put my leg down for 30 seconds and it blew up! Lucky for me I learned to walk and the swelling disappeared! Since then I have minor swelling in my ankles but that's it.

    The burning you feel inside is the "rsd burn." It has nothing to do with the labels I use in saying "cold" or "hot" rsd. That is referring to skin temperature only.

    As for the discolored skin. I'd say a good majority have it right off the bat and it stays. There are people I've talked to over the years that have rsd but no discoloration. It's the reason I hate those stupid guidelines!!! A doctor thinks you HAVE to have every single thing on it or it just can't possibly be rsd! That's just a bunch of bull. RSD for each one of us is as individual as we are. I have rsd in all 4 limbs and then some now. When it went into my arms I had no skin color changes. That didn't happen until about 2 years ago and you can only see the color change if I hang my arms down at my sides. Using the arms and just doing stuff they look perfectly normal.

    It's very possible to have rsd but not have the skin color change. That may yet show up one day out of the blue. I'd suggest keeping an eye out for it and if possible, take pictures of swelling, any color change or anything else you might notice. All these lovely little things we deal with can and do come and go and change every day. It's good to have "proof" to show a doc.

    The joint stiffness is another thing that's a problem for us. RSD is a balancing act of sorts. Not using the body part enough and you could "lose" it, meaning muscle wasting or having it lock up on you and unable to move it. Doing too much leads to a ton of pain. It's trying to keep it moving while not sending yourself over the edge. I would flex my foot up and down, do a couple of leg lifts, rotate the ankle a bit, all while laying on the couch. Not all at once mind you, but just almost absentmindedly while reading or watching tv. I find it helped a lot of reduce the stiffness without upping my pain or having to deal with the massive swelling from having the leg down.

    I had water therapy which I know is what got me walking again. If you can do that you might find it easier on yourself. If that's not an option, fill your tub up. I used to lay in it while soaking and let my leg gently float around up and down,side to side and moving the ankle as well. Water is water! LOLOL Definitely not as great as a pool and not as roomy...unless it's a jacuzzi or a deep tub....but it's something.

    Hope this helps you out some.

    Hugs,

    Karen

     
    Old 12-22-2008, 07:06 PM   #15
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    Re: RSD so many questions

    My question is ,how may rsd patients on here has gone thur rehab?
    I went for 3 weeks they sent me home because i had to have a shoe made for me, it hurt so bad that i was sick all the way home.now they want me to come back for 3 more weeks. We exercise 6 hours a day, 30 min lunch , lecure for 30 min and quiet time for 30 min. They do all sort of things to my foot and i hurt so bad i cry, my dr says that is not normal, most people scream or get mad.it takes a lot to get me mad, but when i am in so much pain i cry. They take different things and run it over my foot to see if i can stand it, when my foot turns purple or red , swells up they wonder why i am crying. Should i hall off and slap them to make them happy.while at this center i also fell and now have to do thearpy for my wrist and shots ...ect.
    Newbie

    Last edited by berdiejoy32; 12-22-2008 at 07:08 PM.

     
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