Finally reached remission
I found this board and have been following the posts for the past year and I decided to share my story. Hopefully, this will help someone to see that there is a light at the end of the tunnel. This is kind of long so bare with me…….My problem started in Aug ’10 after taking the antibiotic Cipro for about 3 months for an infection. Around that time my hands just did not feel right. There was no burning, aching, edema, etc. I had a tingle sensation which I did not think much of at that time. Several days later I developed a throbbing pain and edema in both feet. They also felt icy cold. I scheduled an appt with my PCP and was able to see him about a week later. He thought it was caused by the over use of antibiotics and suggested I stop using Cipro for awhile and everything should clear up. Soon I discovered no matter what type of medication I used from aspirins to applying sun screen to my skin, it would make all the symptoms worst. After about 3 weeks, the tingle in my hands had turned in to a raging fire. Now I was suffering from sensitivity, deep burning/ achy pain, cold intolerance and was never able to sleep for more than 2 hours due to the pain. I knew this was very serious by then so I re-scheduled another appt with my PCP. He referred me to a neurologist for the problems with my hands and feet. While waiting for my appt with the neurologist, I decided to do some research. The thought of RSD came to mind earlier but I was in a little denial because I had not injured myself plus the other symptoms created but the use of any medicine made it seem very unlikely. I was a little lucky that I am a physical therapist and had a background dealing with RSD patients but it had been years since I had seen or treated one. About 3 weeks after onset, I was positive that it was RSD. I knew it was going to be a rough ride.. I found this board and felt even more hopeless…
Funny thing was that I had been dealing with chronic pain in the pelvic area from Prostatitis for about 10 years and RSD bumped that pain out of the picture. I was taking Pamelor for that which reduced the pain level from 6 /7 to a level of 2. I had stopped taking pamelor along with the Cipro a couple of weeks earlier but decided to give it another try with some ibuprofen after reading about meds prescribed for RSD. Taking those two meds together took the edge off the pain and was able to get 6 hrs or so of sleep. I enjoyed the benefits of those meds for about 4 days before I had to stop taking them due to the pain and edema that it created in my feet which was just as bad as the pain in my hands. I was pretty sure what i had but yet can not even tolerate a simple ibuprofen without creating other problems. ….This disease is a race against the clock and I can’t do anything about it. Life sucked!!!!!! The only relief that I got was wrapping my hands in heating pads which took the edge off the pain for about 2 hours. I was unable to take any type of medication for about 2 months which I suspected was caused by the Cipro.
Finally saw the neurologist in Oct’10. Told her my story about using Cipro, the lack of ability to tolerate any medication, and that I was sure that I had RSD. She was no help at all and stated Cipro would never cause any of those problems. At least the EMG was done which showed no nerve damage and I got a referral to the PM specialist. I saw my PM doctor by the end of October and explained my history. He was a little puzzled about my history but was kind of in agreement with me that it was probably RSD but wanted me to have a spinal MRI before starting treatment. He also stated that he didn’t think Cipro would be the cause of this. He stated it was probably a mild case of RSD since I only had problems with cold intoreance, increased sensitivity, deep burning/ achy pain. I am thinking I am dealing with pain level of 6-8 everyday so it definitely don’t feel mild to me. Luckily by this time I was able to tolerate medication again and was able to take my Pamelor which took the edge off the pain. My next visit he prescribed Lyrica and scheduled my first block for the following week. I started taking Lyrica and stopped taking Pamelor which was a big mistake. The lyrica worked like a dream without any side effects… It completely suppressed the deep burning pain in about 10 days but I was still dealing with the sensitivity, cold intolerance and the ache in both hands.
I had my first SGB block for my left hand in Nov ’10 which provided zero relieve. Once again I am was still thinking about that window ( first 90 days from onset is the best period for achieving remission.). The PM wanted to hold all other SGB and to allow lyrica more time to work but I pushed for the block for my right hand. I told the dr how helpful lyrica was for the deep burning pain but it did nothing for the sensitivity and the deep achy pain. He told me to try capsaicin which amazingly provided some relieve from the deep achy pain as long as I never used my hands to do anything…..:) . Basically I was still miserable from the sensitivity and deep achy pain especially after using my hands all day, plus the fact that the cold weather was moving in. Anytime the outside temperature dropped below 70 degrees or I entered an air conditioned room, the deep achy pain would cause me pure misery.
By the end of Nov ’10, I had the second block for my right hand. Yes… it worked!!! I had the Horners’s syndrome and a little relieve immediately. After 3 days, the sensitivity and the deep achy pain completely resolved … Two weeks later, I had a second SCB for the left hand. This one worked too!!!!! The sensitivity and the deep achy pain completely resolved after about 3 days ….. I felt the nightmare was over and I had beaten this monster at the 4 months from onset mark….I enjoyed maybe 10 days in which I had zero pain or sensitivity in both hands.
I was still dealing with the prostate infection after putting that treatment on hold for months so I decided to re-start the use of Cipro again in Dec ‘10… Bad decision!!!!!! Five days after restarting that medication, all hell broke loose again. Everything returned – the deep burning pain, the deep achy pain and the extreme sensitivity …. I felt lower than lower by not following my gut that Cipro was the cause of all my problems. After a little research, I discovered it wiped out the liver enzymes needed to break down medication. I couldn’t tolerate any medication except Lyrica once again without having the pain and edema return to my feet for nearly 6 weeks, not even my “good burn” friend Capsaicin. I returned to the PM specialist and had another block the following week which provided zero relieve. The whole thing felt like a night mare that would not go away. A couple of days later I bumped my left elbow on the edge of the computer desk. It swelled, stiffened and felt like someone had broken a Louisville Slugger across my arm. I didn’t have the strength or range of motion in my arm to pull a T-shirt overhead for 2 weeks and the bruise/achy feeling took almost 2 months to clear from my elbow.
Luckily lyrica suppressed the deep burning pain after about 2 weeks but I still had to deal with the deep achy pain and allodynia. Feeling defeated and extremely stupid, I spend my time reading any article related to RSD and working my way through old posts on this site. I came across Dr Hooshmand site for RSD. It is an excellent source for RSD information. That is when I discovered proper comprehensive treatment consisted of an anticonvulsive and antidepressant medication together as a starting point. My PM doctor had suggested that I add cymbalta to my treatment meds back in December but I didn’t think I would be able tolerate it so I placed that on hold. After feeling misery from the cold intolerance, sensitivity and deep aching pain near the end of Jan ‘11, I called my PM and got an rx for Cymbalta. I took 60 mg of it for about 4 weeks and received zero relieve. I told my PM about Dr Hooshmand article and that he recommended adding trazodone as part of the treatment so the PM added it along with lyrica. I slept like a baby but it did nothing for the other symptoms so I gave up on it after about 3 weeks.
It is now March ’11 and it has been 7 months since the onset of RSD. I am still feeling miserable from the other symptoms but I was doing better than most people on this board and able to work. I was still taking Lyrica and it had completely suppressed the deep burning pain. I continued to use capsaicin 2-3 times a day to relieve the superficial burning that came with using my hands all day long. My daily pain level was usually 5-6 and I was able to get a good night of sleep. I figured I had missed that window for remission. And one day it just hit me…..Why not try my old friend Pamelor which worked very well at reducing similar deep achy pain associated with prostatitis that I had deal with for almost 10 years before RSD came along and bumped that pain out of the picture. It was a cold day for the Phoenix area so I was feeling really achy the entire day and decided to take 75 mg of pamelor at bedtime not really expecting much relieve. I wake up about 4 hrs later with a smile and with my head resting on my hands. I had not been able to rest my head on my since hands since December when I had a brief period of relieve from the blocks. Pamelor had reduced the pain, cold intolerance and sensitivity by 70% after just 4 hours. I couldn’t believe it!!! This medication was sitting right next to my bottle of Lyrica everyday and it really never cross my mind to add it to the treatment.
The symptoms slowly started to resolve with the use of Lyrica and pamelor together. After 6 weeks, the sensitivity and deep ache pain completely resolved. It took about 6 more weeks for the cold intolerance to completely resolve. I visited my PM doctor again in Jun ’11 to refill my medications and told him about my progress. He was a little surprised and wanted me to tamper off both medications but I was not ready to give up my two best friends yet. He gave me an rx for 3 more months of each medication and wanted me to return. I was completely free of any symptoms of RSD during this time but still had no desire to stop taking the medications. In August, I hit the same elbow on the edge of the computer desk with the same intensity as the last bump back in Dec’ 10 but this time it was different. I said “Ouch!!!!” and rubbed my elbow for about 15 seconds then forgot about it…And that is what should happen after bumping your elbow on the edge of the furniture. I visited my PM again at the beginning of Sept and had him tamper my off Lyrica and Pamelor. I have been off all both medications for about a month and still remain free of any RSD symptoms. The only residual effect of the disease is that I get a tingling sensation in my hands whenever I get really stressed which reminds me of the first couple of days after onset.
Getting diagnosed and starting the proper treatment within six months are crucial if you want to have a good outcome with this disorder. Educate yourself about RSD and keep searching until you find the right medication for you because no one should have to deal with this monster.
Re: Finally reached remission
Congratulations! I hope your remission is VERY long lasting!
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