Living with RSD

DUCKY’S STORY

My name is Ducky,
I have total body RSD, fibromyalgia, connective tissue disorder, and chronic fatigue, polyglycemia. I have internal organ involvement with the RSD including but not limited to eyes, mouth, bladder, bowel, liver, ovary, gall bladder (since removed) all 23 teeth remaining (also removed). It is not fun but I have learned we can live with this disease and we can still do many things, the trick is to not dwell on what we cannot do but rather on the things we are still able to.

The trick to RSD, is “Acceptance.”

On July 26th, 1996, I was working as a phlebotomist in an geriatric care facility when I was requested to help transfer a patient to her bed from a shower chair. As we lifted I felt a popping sensation in the left hand and wrist, so loudly that the other person assisting me, heard it also. The nursing station was only about 100 feet away and by the time I had reached her, it had swollen to twice its normal size, and very discolored, and unimaginable pain. We were short staffed, so I was not permitted to leave to seek medical help until my shift was over at 6:30 am. I went directly to the ER, where xrays were taken, and the ER Dr. diagnosed a fracture in the scaphoid bone in the wrist, which oft times does not show in xrays. He gave me a prescription of darvocet and sent me home for a couple of days, no work, until I saw my primary physician.

Monday morning in her office, she changed the diagnosis to a fracture of the navicular bone, due to the area of pain. I was in a cast for two months. The pain had not subsided, and had become increasingly worse.

It was at this time sent to an orthopedic surgeon who after a fifteen minutes session, where he drew lines on my hand, told me he knew exactly what was wrong. I had DeQuerves Tenosyvitis. He then scheduled surgery in three weeks, as he wanted me to attend some physical therapy to help desensitize the area.

The physical therapist applied bags of ice and an electrico stimulation. I cannot tell you the pain these treatments were to me.

The surgery sent for Oct 11th, 1996 went as planned, until the next day, when the anesthesia should have been well gone by now, my hand was terribly numb in spots and began to have muscle spasms which would draw the hand back causing massive pain. I mentioned this to him the first post-op appointment and his words to me where “Oh stop whining and get to therapy.”

Well needless to say, I never returned. I see an orthopedic in another town who was surprised at the type of incision that was made for the dequerves release. He then directed me to a neurosurgeon who performed nerve conduction studies, and a bone scan which proved beyond doubt, RSD The reason was that due to the way the dequerves was done that they had severed the superficial radial nerve. I was then directed back to my Dr with a script of darvocet that did nothing for my pain at all.

This continued over the next few months, I had started developing the same burning in the right hand, and was sent to a DR. in Cheyenne, who then diagnosed the spread into the other extremity.

Sent back to personal Dr again, and not knowing what else or how to proceed with it, sent me to another specialist in Denver, Co, who has the documentation to prove his knowledge of RSD. He ran a pentolomine challenge which had no effect on me. I felt no difference in any of the 4 meds they injected by IV> He sent me back home with a list of instructions and meds to try. Also to have a series of Stellate Gangleon nerve blocks. These were super for the pain and I was not warned on the maximum amount you should have, and I ended up with over a hundred, which resulted in a virtual sympathectomy. He also explained it had entered my central nervous system,,,,thus total body. I was so devastated…I could have called Dr. Kevorkian at this time.

Well, over the last few years, they have basically been trying to keep me as pain free as possible, with over 50 different kinds of meds. I was in fog for quite some time.

I had an epideral block done which lasted for about a month. But on the flip side, this Dr did not use a flouroscope,,,,and of course nicked a hole in the epideral lining, causing bacterial menigitis and also a spinal headache which was not an option as it would patch in the infection so I layed here at home sicker than I had been in my life.

I then, having been fed up with the medical profession, stopped all meds: I was on MsContin, Oxycontin, Duragesic Patch, Actiq pain suckers, and morphine sulfate instant release. I also had been on anti depressants, and paxil. I did fine for a month and when the epideral wore off, the pain was not comparable to anything. I was during this time, also diagnosed with Fibro, MFS, CTD, CFS, and possible MS

Well, had to cry uncle and went up for 4 separate injections of demerol in three days. She also insisted going back on the Methadone, Actiq, Trazadone and xanax. I am hoping and praying with all my heart I can stop this when I get myself moved to Georgia to a warmer climate.

I followed my DR’s advice and moved to a town about 30 miles north of Atlanta, GA. I had a very difficult time in locating a DR willing to treat an out of state work comp case. I found one that turned out to be very uneducated in RSD and again started searching finding a willing Dr, then of course work comp refuses this and lets the first physician refer me to a DR of his choice.
Due to the problems I have had associated with getting adequate medical treatment, we then began making plans to move back to Wyoming where this nightmare all began. I wanted to add, this Dr in GA was sending video tapes of me to work comp without my knowledge, he was a total disaster.

In Nebraska, my hometown and just 30 miles from where I lived in Wyoming, I again found solace in the compassionate medical team I had before leaving. I finally settled for pennies to just be out under the hand of the work comp agencies where I could live my life in some peace without the constant stress.

On May 13th, 2002 I was given my life back for a short but wonderful time, thru a Dr in Fort Collins Colorado, who did an upper extremity SCS implant. It was highly successful and although my lower pain was still there, not as prevalent as before.
I was without pain for the first time in 7 years, over did it, things I was warned to not do for some time, like plant my herb garden, my rose bushes, etc. So without mention, the SCS began to fail, and back into surgery as I had moved the leads.

On Oct. 17th, 2002 I had the spinal cord stimulator revision done, and hoping again for pain free days. My spinal cord is swollen and at this time, I am not able to utilize it very well. I also suffered from thrombophlebitis, that put a pretty good scare into me.

On January 2nd, another revision was done to dry out the connections that were not operating correctly and after the surgery the SCS was not working any better than it had prior. I found another Dr in Cheyenne, Wyo, for another opinion and we are now making plans on removing the SCS and trying the morphine/baclofen pump as soon as the necessary presurgical things are done.
I returned to my Dr in Ft. Collins with my feelings on where we should go from here. We agreed that the removal of the SCS is first off, and that was done on March 24th, 2003.

I was set up for the trial medication pump on May 15th, 2003. One week prior to the trial pump I received a lengthy letter from my Dr indicating he had reconsidered and decided NOT to do the pump, nor treat me any further. I made an appt with him to speak face to face, and he explained in detail why he felt this was not for me. He said first off, my disease is in its final stages, and that my disease was too diffuse and complicated. I started having blood clots last October after the first revision and he feels that it will happen again. He states my immune system is so damaged that I am a high risk candidate for an infection, up to an including menigitis [meningitis] that could cost me my life. He said the risks far outweigh the benefits and feels that he cannot do this trial or the pump implant. He suggested I get another opinion and that is exactly what I am doing.

I am on the waiting list at the University of Denver for a time allowable for me to have the trial pump which is basically all that is left, but never ever give up. Since the initial injury I have seen and been treated by 39 Drs. so I figure there is another, with another opinion not too far down the road. I have a fantastic Licensed Nurse Practitioner, whom knows more about RSD than all the so called “professionals” that treated me at Emory University at Atlanta GA. She is super, and I refer to her as “God” most of the time, her understanding of this disease and pain is unreal.

So for now, I take the morphine, to keep pain tolerable but not entirely gone and seek some help.

In September of 2005 I had no choice but to have all my teeth removed surgically due to the RSD running rampant in my mouth and face and my teeth were all deteriorating and loose, none were connected to the bones anymore. The dentures, although they look great, I cannot wear 24/7, only a few hours at most due to the touching of the denture to the RSD infected gums.

That was the 9th of September. On the 22nd of September 2005 they finally removed the vein in my leg with the blood clots, there were five in all so the entire vein was removed. I was given a good epideral prior to surgery which did indeed prevent a flare up in the leg.

In April of 2006 the next removal was that of my gallbladder which was so full of sludge and huge stones. Luckily it was done with the laparoscopy so no big incisions and the healing time was faster.

In early 2007 the pain in my legs and feet were unbearable, and first diagnosis was cellulitis in my feet. I was given antibiotics but with our immune system we never quite heal that up.

In February 2007 an MRI indicated that I had a bulging disc at C3 and herniated discs at L3 L4 L5. I began the lumbar epideral injections and they did help. I have had one set and they do them every six months to keep leg and feet and back pain down. I am NOT a candidate for surgery so the injections of depomedrol and marcaine or lidocaine are about all there is left. I am now using the MS contin, MSIR, Xanax, Paxil, clonidine as my blood pressure has elevated quite a bit, and tried the ambien at bedtime. It does not help, as I can fall asleep just fine, it is the staying asleep that I cannot do, so thank God for the computer so I have someplace to go during those long nights of no sleep.

I take frequent naps, throughout the day, and long for one night of 6 hours of uninterrupted sleep. I know that will no longer happen.

The electric wheel chair I have fought for 11 years using is finally sounding like a blessing and one ordered and being delivered as I try to update this. I am looking forward to this as I can get out and do things. I am not able to walk very far and I fall a lot, which I am afraid is going to break some bones eventually.

I have heard the line, “There is no more we can do for you here, so please find someone else.”

It gets very tiring but we have to keep on trying, we can NEVER give up, if we do that is letting the RSD win. We cannot let that happen. In the time from 2005-2007 the pain was horrific in my lower back, knees, ankles, and bottoms of my feet felt like I was walking on broken glass.

We did another MRI which indicated disc herniation beginning from the RSD, in L5-L6-L7 and C3. They did a series of lumbar injections where I could have 3 in a six month period, and they worked well, not a cure but a pain relief I needed desperately.
She at this time did some blood work as the pain my knees were bad and my legs, etc. I now have polyclyclemia and had to stop smoking. I used the transdermal patches and in 25 days I was off cigarettes, from 3 packs a day to none. Quite an accomplishment but it is so amazing what we can do when our health is involved.

So thats where we are now. I will continue to update this as things happen.

Take care and love yourself.

Ducky

Thanx,, Ducky Duckworth