I have just been diagnosed from a broken ankle 4 months ago with this …? Early stage I need help with how to deal with this I am 39 years old and have always been out going not used to this pain at all…Thanks
hi fitz Have you tried gogling rsd pain groups, Ive met a few people with this condition, and im sure its very hard to deal with, just being diagnosed and all. good luck hun
God bless and thanks so much …I dont know where to look so I will try there …take care and keep in touch…Tammy
I will, let me know if that helps. I can relate to the burning pain, but its not the same condition. I hope you can find a good support group.
hugs Ronda
thank you for your reply…The meds I am on now help the burning and tingling no pain but when my foot is in the warm bath boy does it look funny??? redness in all different places looks like I have the measles…??? but my foot sweats now like crazy…I feel lightheaded ??? this is just crazy now I go to the dr for the first time a nurologist and they tell me I need physcological help also??? What is has this broken foot brought me too and will I be able to go back to work???
well right now the way I feel so spaced out from these meds and they are all seizure meds and anti deppressants…and a anti flammitory…I feel like I am a nut case…what the heck is going on…am I on the wrong meds??? the swelling is down and just have some tingling in my feet now but my head is gone??? any suggestions?
Thanks all.
The only suggestion I know for RSD is keep on keeping on. It took 18 months before the tingling and sweating and color changing stopped. You say your pain is gone? If so you are very fortunate! I too took anticonvolsants i know i didn’t spell that right. My foot looked like measles too. sometimes red sometimes blue. /don’t give up!!
Thanks sweetie…well I must have had a good day…went to the nurologist today and the pain is there yikes…they do not treat it but are sending me to a pain clinic what ever that is??? I just came home and soaked my foot but my husband is not to happy we came out of there and he did not want to speak about it at all…he is very depressed over this …he is dealing with cancer…our luck is not to good right now…thanks for the 18 months I pray that It goes into remission…PLEASE GOD!!!
The pain clinic will be able to find the best way to treat your pain. Yours is in your foot, too? They have options of meds, physical therapy, different pain blocks, all sorts of things. Best place for you. I am sorry you are having such a hard time. I will be praying for you and your husband and his cancer. You are in my thoughts and prayers.
Don’t give up on the medications. At first they can really make you feel terrible but some of that will wear off. If it does not wear off there are similar medications that may not have the same side effects as the ones you are on. I was put on Neurontin and couldn’t handle it but was switched to Lyrica after a few months and it made a huge difference for me.
I have had very good luck at the pain clinic that I go to. Doctors are afraid to hand out pain meds because if the DEA thinks that they may be handing out too many narcotics they may loose their license to practice medicine. Pain clinics specialize in pain and know what works best for different types of pain. I love the people at the pain clinic that I go to and was even made to go to group counseling. I didn’t want to at first but found the counseling amazing because I got to spend time with others that felt the same way that I did. Before going I thought I was loosing my mind. I also leaned many helpful ways to deal with the depression, pain and memory issues that the pain was causing. You are not alone and please remember that. You are not crazy and remember that also.
I had to stop working a few years ago because of the pain. I have applied for social security disability which is another problem besides the pain. It takes forever to prove that we are not faking. I would much rather have my old life back but that will never happen. I just need to find the new me and the new life that I have ahead of me.
Thanks so much for all of your help…you are great…I will not give up and look forward to the pain clinic…as soon as they call just waiting…this pain sucks. as you know but I wonder when I will be able to go back to work? I have to see my nuerologist in 2 weeks so I will know then … I just can barely walk to the washer right now so I have no idea how I could work it is scary and remembering things stinks! I have already been on seizure meds as it is and going on some more just scares me!!! wow Thanks for all of your input…
God bless and take care
Tam
Memory problems are very common with people that have chronic pain. I thought that the medications were doing it but what happens is that the pain interferes with the memory process. I find that I can forget what I am doing while walking across the house to do it. It was suggested to me that if I need to remember something that I repeat it several times out loud that it helps. I may look silly doing it but it works. I also have problems keeping focused. If I intend to clean the kitchen I get distracted and end up cleaning in my bedroom, sorting papers or just plane forgetting. I try to remind myself to clean one room at a time. I carry around a basket and when I am done in the kitchen I put everything in my basket that I wheel around on a chair with wheels. I then take that basket to the next room, remove all the belongings that go in that room and start all over. I used to be anal about my house but I have given up on that part of my old life because I just can’t keep up anymore. What matters is that I am still able to spend time with family even though what I do with them now is not the same is what I used to be able to do with them.
I wish you all luck. Our lives have changed and we are pretty much grieving our “old” selves. We get angry, we go through denial and we get depressed. Keep you chins up and think positive. Don’t let it take control of your lives. (((((Hugs)))))))
I hope that I am allowed to say this…Yahoo has different groups that you can join. Once you get to the yahoo groups site you can enter your diagnosis. I do believe there is a RSD group. These groups are really amazing and full of people that are suffering with the same issues that you are. I belong to a group of people that have Ehlers Danlos Sydrome and there are over 600 members. Many of these people have become my best friends and I have never even met them in person. Good luck and many ((((hugs)))).
I hope that I am allowed to say this…Yahoo has different groups that you can join. Once you get to the yahoo groups site you can enter your diagnosis. I do believe there is a RSD group. These groups are really amazing and full of people that are suffering with the same issues that you are. I belong to a group of people that have Ehlers Danlos Sydrome and there are over 600 members. Many of these people have become my best friends and I have never even met them in person. Good luck and many ((((hugs)))).
ok well I have been to 3 Dr that say RSD and a one bone scan that says rsd went to my nurologist and he looked at my red feet and marlbled legs and said I dont think it is rsd I think it is a nerve problem????? I want to do a emg? ok I said so what about the pain? he said he still wants me to go to the pain clinic on wed this week.....I dont know what to think also he says you are depressed??? no s---- would you be if you have been in the house for 3 weeks with this kind of pain??? will the pain clinic diagnose this ?? I dont know what to do??? now I have these foot specialist telling me rsd, my dr saying rsd, and they send me to this specialist and he says this ???? I am on some meds that are helping the pain but still having the anxitey about going out?? dont know why and now need some info for work to get this time off because my Dr took me off for RSD and that is what they approved me off for now this Dr is saying a nerve dissorder and wants me off for another 3 weeks?????????? dont know what to do. Thanks for letting me vent guys.
Tam
I am afraid the RSD is coming back. I can’t walk more than 2 blocks without being in pain in the foot that had RSD. It is not the horrible burning pain of RSD but the aching can’t take another step pain I had before the RSD pain set in. And this pain doesn’t go away. It wakes me at night too just like the RSD pain. I’m so afraid. I don’t think i can do RSD again.
so sorry nand....well I went to the pain clinic and they said it is rsd and I have pain at night but they want to do 2 blocks a week for 3 weeks and I am scared to death?? dont know what to do I called my nuerologist and he said why dont I just wait and keep taking the meds see him in 3 weeks and he will refer me to a rsd specialist 100 miles from here??? I dont know what to do?? Do I have to take these blocks????????????????????? HELP
Hugs Tammy
Hi Tammy, I am so sorry you are going through this! By blocks do you mean "nerve blocks"? if so I'd hold off on those until you get more information and some kind of concensus between your Doctors. Do you think it's possible for you to continue giving the meds a chance and see how they help, or are your symptoms too intense for you to wait?
As far as your earlier posts about memory loss, confusion, being in a daze goes- Yes pain can cause those but when I was on an antiseizure med, (Neurontin) it took about 2 weeks for those symptoms to calm down. It was so hard for me to give the med a chance and keep taking it when I felt like it was robbing me of my "self" and "awareness" to such a great extent. It did indeed mellow out and I returned somewhat to my old self, and I stayed on it for about 6 months. But in my case, the Dr.s were giving it to me for chronic headaches, hoping it would help with pain, and it never did. I finally decided what little benefit I got was not worth the side effects and took myself off it. (gradually! never go off an antiseizure med suddenly!) Now, for you, with RSD I'd strongly encourage you to stick with it at least a month and give it a chance... it's very likely to work in your situation, and give you some relief. My mom who is diabetic has been taking the same med for her leg and foot neuropathy with the same initial and ongoing side effects, but for her it is worth it as she gets the desired relief from her symptoms, and has long since (for her it took about 3 weeks) adjusted to the side effects and is no longer lost and spacey, dizzy etc.
Antidepressants also have caused me to feel lightheaded and even have nausea, but once again, only until I adjusted to them. How long now has it been that you have been taking the antiseizure and antidepressants?
Good luck with this, and please keep us posted on what your experiencing!
(((HUG)))
~ Shacoya
Ok, I Googled RSD and found some fantastic links you should check out. One thing I just learned is that not just are you experiencing some of the above things because of the meds...as I talked about in my previous post - but those same symptoms I now have found out are directly related/caused by RSD! So I am afraid you are getting a "double wammy" and will only get possibly 'some' better when you adjust to the meds. :(
Check out these two sites when you can:
http://www.rsdhope.org/
http://www.rsds.org/index2.html
(((HUG)))
~ Shacoya
hey ..thanks so much for the web sites...I am staying on the meds and I am not going to do the beir blocks just yet the pain clinic really scared me some woman up there cussing them out for her meds??? and then when I got back there he was telling me that I needed to do these blocks before it went to my arms and sometimes they work and sometimes they dont....I called my nueorologist and told him I wanted to see a specialist if I have to drive to Cleveland clinic so be it....My job will have to wait but I want soemone who knows what they are doing to look at this...The dr increased my Cybalta and that took the heat away at night last night so hopefully that will work...when should Physical therapy be a factor in this ???? the pins and needles feeling is gone in my right foot but still there in my left slightly....I am walking and stretching but notices when I strech both feet out I have lost some muscle tone in the foot I broke. It looks different is that normal??? Thanks so much for your input,,,, Hugs...
Tammy