Anyone with RSD? - page 2
reflex sympathetic dystrophy? i was tentatively d/xed with it today :angryfire... Read More
Oct 12, '07Quote from czyjaThank you :spin: Update - I definitely have RSD d/xed by EMG and full body bone scan. This dx is very difficult.....doctors tend to think you are drug seeking :trout:I am glad you found a good online support group. This is tough disease - I have seen it about half a dozen times in the psychiatrist's office where I work. Some of the pts recovered quite well. Take good care of yourself - I will hold you in my thoughts and prayers.
I am extremely lucky to be d/xed so early in the disease. I have good chances for going into remission. So far I have had one sympathetic block (stellate ganglion) that I received a bit of relief from. Neurorologist and physicatrist (not to be confused psychiatrist, :spin both agree I will need at least 5 blocks to go into remission. I am very hopeful
One big complication is that my hypothalamus has kind of gone kuckoo releasing too much ACTH resulting in sky high glucose readings. I can go from 90 to over 500 in about 3 hours without eating a thing. Waiting to get into endo and doing Q2hr accuchecks and inuslin!
Oct 12, '07Quote from HoozdoI know. Isn't that horrid? This would drive the shrink I work for NUTS. The pt's PCP (and very often the pt's insurer) would think the pt was drug seeking therefore pt would not get adequate pain control for this very painful condition, this would lead to major depression and voila the pt is in our office with suicidal ideation. Stupid, stupid, stupid. Needless and stupid. Incompetant care makes me feel a profound sense of outrage. Arrrghh!This dx is very difficult.....doctors tend to think you are drug seeking
I am so happy you caught this in a timely fashion. I dont know you but in all honesty I have been thinking about you all morning. I dont know what to say except that I am very happy that things are going as well as possible for you.
Get well soon!
Oct 19, '07One of my best friends has it and has for quite a few years. He's not been one of the fortunate ones though and has had a really rough course with it. I have chronic pain for other reasons so I can relate to a certain extent. It's good you caught it early! Hope all goes well!
Nov 12, '07Hello All,
For some odd reason I just now saw this posting regarding RSD or CRPS (Complex Regional Pain Syndrome) which is, I guess you could call it, the NEW name for RSD.
Have had this bloody thing since 1995 had bone graft done. Wasn't diagnosed in time, well time enough for any type of physical therapy to be effective.
Spent a lot of time in great amounts of pain before I found a really good knowledgeable pain management physician who knew about RSD. You would be surprised how many physicians out there never heard of RSD/CRPS.
Have been on soooo many different pain meds: Fentanyl patches, OxyContin, Methadone, TENS unit, Elavil, mega doses Neurontin.....My X-Rays really didn't show much bone thinning either, but then again, that is not a definitive diagnostic test anyway. Much of the time RSD is diagnosed based on the patient's signs/symptoms
I am one of the lucky ones. I am presently in remission. Not sure how long it (the remission) will last...Still have the burning pain to my affected arm BUT it is a tolerable 8/10 instead of the 25/10. Have been able to wean off the pain meds, still take Neurontin but was able to wean myself (with the assistance of my pain MD) down from 2400 mg/day to 600 mg/day (enough to keep the burning, stabbing bone/muscle pain at a minimum)
I don't have full use of my affected arm/hand plus I have RSD to my thigh (after I received a IM injection there) and in my knee (s/p patella dislocation)
I am not sure why ANYONE would pretend to have such a horrid thing like RSD/CRPS. If I could only go back in time and not have the original surgery. I lost many years of my life because of this bloody thing.
Nov 12, '07Thanks for the input Athena. It's nice to know somebody in remission! Sympathetic blocks (stellate ganglion) are working for me, but it's like pulling teeth to get Workman's Comp! I have been waiting over a month for block#3 and am losing valuable time
I am back at work now on light duty. My limit is 15 lbs AND IT IS TRUE TOO! Going to PT a total of 9 hours a week. I don't have much of a choice - go to PT or have my arm wither away.
Take care all and thanks for the input
Nov 13, '07Quote from HoozdoHiya Hoozdo! I am glad to hear you are feeling a little better. I work in the workers comp arena and insurance companies are truly awful. Kick, scream, and threaten to get the treatment you need. Do you have a lawyer? If not, get a good one. You have a highly compensable work related condition. A lawyer will be all over the insurers. Also if you are in Cali or a handful of other states psych sequelae are covered. I few visits with a counselor, preferably in an integrated pain management setting is known to help.Thanks for the input Athena. It's nice to know somebody in remission! Sympathetic blocks (stellate ganglion) are working for me, but it's like pulling teeth to get Workman's Comp! I have been waiting over a month for block#3 and am losing valuable time
Nov 13, '07Quote from czyjaHi there my friend,Hiya Hoozdo! I am glad to hear you are feeling a little better. I work in the workers comp arena and insurance companies are truly awful. Kick, scream, and threaten to get the treatment you need. Do you have a lawyer? If not, get a good one. You have a highly compensable work related condition. A lawyer will be all over the insurers. Also if you are in Cali or a handful of other states psych sequelae are covered. I few visits with a counselor, preferably in an integrated pain management setting is known to help.
Previously my WC RN was very responsive to me and we talked daily. I never thought I needed a lawyer. I think I do now and I am searching. I have only searched through the internet and don't have many bites WC is trying to close my case and I am FAR from being pain free.
THank you for the sincere advice
Jan 15, '09i have rsd. i was diagnosed when i was 12 years old (august 1999) after chronic pain following a reinjury of my left lower leg. i went to several doctors that accused me of "faking it" to get out of school and by the time my mother who thank god is a nurse found someone who knew about this disease, i was wearing ace wraps over the leg, not even getting my leg wet because it hurt so much, and barely walking. my physician gave me over 30 epidurals (most injections and 3 continous blocks for 48 hours of more) and 1 sympathetic block. within 9 months, the disease went away. of course i never forgot and was thankful to be pain free, but i moved on.
until october 2008. week 8 of my 1st semester in my senior year of , the pain was back. i knew what it was and immediately called the same physician that cared for me so many years ago. i thought he was more upset than i was. i had a block later that day. i had a few more blocks then we tried a dorsal column stimulator. i had the stimulator placed december 5. i was able to barely complete last semester and expected the stimulator to really help make the pain go away.
well here i am 6 weeks later and still in pain. i started back to class monday and know that the stress of school has a negative effect because of the sympathetic nerve activation. i'm not sure how i am going to do it but i will get through this semester with all of the clinical days and testing that comes with the last semester of nursing school (thank god it is the last).
i am still attempting to figure out what to do with the degree when i finish because i'm lucky to get a few good hours on my feet and i was planning all along to go back to school to become a midwife. if anyone has information or suggestions regarding jobs that would fit someone who is a new grad with only clinical experience and cannot stand and walk for long periods of time. i live in the midwest, but i would be willing to move anywhere if i had a job that fit my needs.
oh and anyone else with this disorder - i am so sorry. one day at a time and i read the serenity prayer frequently.
thank you in advance,
Jan 30, '09Hi Ruthie,
I am so sorry your pain has returned. Do you have a Medtronics stimulator? I have heard through RSD forums that if you get relief from the stimulator is usually only lasts for about 6 months.
Have you investigated intrathecal pain pumps? If you go this route, I would recommend doing a lot of research on the drug Prialt if they want to use that on you. Can you get anymore sympathetic nerve blocks?
I am doing well and still in remission (fingers crossed). The only thing that causes an issue is the vibrations of driving if I hold the steering wheel with my left hand. I do a lot of right handed driving!