Post by jeffn on May 27, 2009 18:44:21 GMT -5
What follows is a brief account of my “Travels with SD”
In Jan’06 I began to experience pain in both of my hands. Kind of like someone sticking a push pin into my hands and fingers. With in a few weeks I had begun to have difficulty making a fist. My GP tried some anti-inflamatories and prednisone with little success. My GP thought that perhaps I was having Carpel Tunnel problems and sent me to an ortho doc. He also tried different anti-inflamatories and did some testing. By this time it was summer of ‘06 and I was very fatigued sleeping perhaps eighteen hours a day, my joints hurt terribly, my teeth and jaw hurt, my teeth were moving, had a lack of strength in my upper body and upper legs, headaches, pain in the soles of my feet when I walked, digital ulcers, edema in my arms, legs, and hands, my hands felt like they were in a bucket of broken glass all the time so between the edema and the pain my hands were not very useful, a little calcinosis on my fingers, Joint pain was out of control. Raynauds in my fingers and a little in my toes, I was cold all the time, had shooting pains in my wrists and ankles, and a host of other pains. My hands had also continued to deteriorate. Through testing my ortho doc determined that I had border line carpel tunnel but that was not the cause of my hand pain. He suggested I go back to my GP and start over. In Aug. ‘06 the middle and index finger on my left hand began to hurt more and those fingers began to curve and in a ten day period ended up curved enough that when I try to lay my hand flat on a table the middle joints of those fingers are elevated about ½" to 3/4". In Sept. Exactly one month later my middle and index finger of my right hand did the same thing with the same result. My GP did blood work and found my ANAs to be elevated and said he suspected that I had a connective tissue disease. I was referred to a Rheumy nearby and did not have a good experience with him. Go see him have some blood work come back in a month, go back have another test and come back in a month. He never did give me a DX but on the second visit as I was leaving he gave me two pamphlets from the Arthritis Foundation, one a Lupis pamphlet and one a Scleroderma pamphlet and he said “you may have one of these”. I wasn’t feeling warm and fuzzy with him so I moved on. Now Oct. ‘06 I went and saw a Rheumy at a large hospital in Boston. He had me in did bloodwork, x-rays, a breathing test, esophageal test, and a good examination. He did DX me with Limited SD / CREST. I exhibit all the letters. He did put me on Prilosec but wanted me to wait on other medication for the SD and come back for an appointment in April. About this time I became acquainted with AP and read the Henry Scammell book. At this point I was miserable, I still had all the above mentioned issues and by now the skin on my forehead was tight and my the skin on my ears was crusty and I had a sore on each ear. At this point I thought that maybe I could go on minocycline because as a drug the downside seemed to me to be relatively innocuous, so little downside and possibly a lot of upside. I emailed my Rheumy and he replied that AP was not a recognized treatment for SD but would I could discuss AP when I came back in April ‘07. I was miserable at this point and decided to contact the Road Back foundation. I spoke with a very informative and helpful volunteer located on Cape Cod and she gave me contact info for an AP Doctor in Boston. I made an appointment with him and began AP Jan. 23, 2007. Within three weeks the digital ulcers had begun to heal and I was feeling somewhat better. In late Feb I noted in my AP log that I thought I was feeling worse but it was different and I noted that I might have the Flu. I was very run down etc. and went back to my GP, who has been very supportive of AP and a great help through all of this, he ran bloodwork and found I was very anemic. The next day I had an endoscopy and was found to have “watermelon stomach” or GAVE. My stomach was bleeding. The gastro doc said that in my case I should give up NSAIDs and if that did not work he would use the argon laser. Fortunately for me giving up NSAIDs solved my GAVE and by June ‘07 my blood numbers were just about normal. My progress through the spring and early summer of ‘07 was slow but steady, no doubt my progress was slowed down my the anemia. By Oct. ‘07 I was able to actually let myself believe that I just might beat the SD. I was getting back the use of my hands, both in flexibility and the pain in my hands was lessening.
In Jan ‘09 I completed my second year of AP and at this point I am doing well. My fatigue is way down, energy way up, the wrinkles on my forehead came back about eight months in to AP, the edema in my arms hands and legs is long gone, the strength in my hands is back and I can open sodas and jars now etc., most of my aches and pains have gone away, my teeth are back where they were, my reflux is almost non existent, my stomach in general feels much better, my strength in my legs and upper body is much better, and in general I have my life back. I still have a ways to go to get over “life interrupted” but I am getting there. The summer of ‘08 I was able to do many of the things that I had been unable to do the past two years; boating, fishing, clamming, swimming some, and more useful time at work. During the winter of ‘07-‘08 I was able to snowboard again after making one run the previous winter because I did not have the strength in my hand to close my binding.. This winter ‘08 - ‘09 I was back at the gym and the spring of ‘09 has been very good so far, lots of energy and my joint pain is very low. In fact my joints feel much better than they have in a very long time even before my SD went active. My Sed rate was 43 in March of ‘07 and in Oct. Of ‘08 it was 7, at my annual Rheumy check up in early May my SED rate was down to 2 and my hemoglobin was finally in the normal range. It had been just below normal since my GAVE episode.
Downside to this point. My Raynauds has not gotten any better but when my fingers are not spasming the circulation seems OK. While my fingers still spasm the rest of me seems to have a normal temp and I am not cold all the time. I seem to get a yearly Herx in Jan. It is sort of an itchie rash type herx and lasts about six weeks. While uncomfortable it is nothing compared to the pain I had with SD. The good part is that after the herx is over I always notice that I feel better than before the herx. The minocycline makes my stomach a little more active than before but that has not been a problem as a matter of fact that has gone away in time. My middle and index fingers on both hands are still curved but I have noticed recently that my ring finger on both hands is very straight now when I try to straighten my fingers. Previously I think they had a slight curve
Currently I see my Rheumy in Boston once a year in the spring and I try to see my GP every three months or so. In March I celebrated a birthday that two years ago I felt that there was a better than even chance I would never see. Not to be melodramatic but that is where I was at that point. I know that this could possibly all change but for now I am grateful I have shown much improvement and been able to move on.
Update as of 10/04/09. Still have curvature in my middle and index fingers on both hands. The sensitivity is much better of late. They say that the first thing to be affected is the last to clear up and my hands and loss of strength were the first SD issues. Strength has come a long way and the hands don't really bother me all that much. Last spring I began taking an 81mg asprin with my morning mino dose. I feel that has helped considerably. I had to take it slow with the history of GAVE but so far no sign of bleeding or irritation. Had a great active summer and got to do alot of things that had fallen by the wayside the past three years. Today I was able to SCUBA dive again, I checked out my dive log and the last time I went was five years ago. It all went well and was good to be "wet" again. I had enough wetsuit to not get cold and was in the water about an hour. Still not back to pre SD but closer all the time.
In Jan’06 I began to experience pain in both of my hands. Kind of like someone sticking a push pin into my hands and fingers. With in a few weeks I had begun to have difficulty making a fist. My GP tried some anti-inflamatories and prednisone with little success. My GP thought that perhaps I was having Carpel Tunnel problems and sent me to an ortho doc. He also tried different anti-inflamatories and did some testing. By this time it was summer of ‘06 and I was very fatigued sleeping perhaps eighteen hours a day, my joints hurt terribly, my teeth and jaw hurt, my teeth were moving, had a lack of strength in my upper body and upper legs, headaches, pain in the soles of my feet when I walked, digital ulcers, edema in my arms, legs, and hands, my hands felt like they were in a bucket of broken glass all the time so between the edema and the pain my hands were not very useful, a little calcinosis on my fingers, Joint pain was out of control. Raynauds in my fingers and a little in my toes, I was cold all the time, had shooting pains in my wrists and ankles, and a host of other pains. My hands had also continued to deteriorate. Through testing my ortho doc determined that I had border line carpel tunnel but that was not the cause of my hand pain. He suggested I go back to my GP and start over. In Aug. ‘06 the middle and index finger on my left hand began to hurt more and those fingers began to curve and in a ten day period ended up curved enough that when I try to lay my hand flat on a table the middle joints of those fingers are elevated about ½" to 3/4". In Sept. Exactly one month later my middle and index finger of my right hand did the same thing with the same result. My GP did blood work and found my ANAs to be elevated and said he suspected that I had a connective tissue disease. I was referred to a Rheumy nearby and did not have a good experience with him. Go see him have some blood work come back in a month, go back have another test and come back in a month. He never did give me a DX but on the second visit as I was leaving he gave me two pamphlets from the Arthritis Foundation, one a Lupis pamphlet and one a Scleroderma pamphlet and he said “you may have one of these”. I wasn’t feeling warm and fuzzy with him so I moved on. Now Oct. ‘06 I went and saw a Rheumy at a large hospital in Boston. He had me in did bloodwork, x-rays, a breathing test, esophageal test, and a good examination. He did DX me with Limited SD / CREST. I exhibit all the letters. He did put me on Prilosec but wanted me to wait on other medication for the SD and come back for an appointment in April. About this time I became acquainted with AP and read the Henry Scammell book. At this point I was miserable, I still had all the above mentioned issues and by now the skin on my forehead was tight and my the skin on my ears was crusty and I had a sore on each ear. At this point I thought that maybe I could go on minocycline because as a drug the downside seemed to me to be relatively innocuous, so little downside and possibly a lot of upside. I emailed my Rheumy and he replied that AP was not a recognized treatment for SD but would I could discuss AP when I came back in April ‘07. I was miserable at this point and decided to contact the Road Back foundation. I spoke with a very informative and helpful volunteer located on Cape Cod and she gave me contact info for an AP Doctor in Boston. I made an appointment with him and began AP Jan. 23, 2007. Within three weeks the digital ulcers had begun to heal and I was feeling somewhat better. In late Feb I noted in my AP log that I thought I was feeling worse but it was different and I noted that I might have the Flu. I was very run down etc. and went back to my GP, who has been very supportive of AP and a great help through all of this, he ran bloodwork and found I was very anemic. The next day I had an endoscopy and was found to have “watermelon stomach” or GAVE. My stomach was bleeding. The gastro doc said that in my case I should give up NSAIDs and if that did not work he would use the argon laser. Fortunately for me giving up NSAIDs solved my GAVE and by June ‘07 my blood numbers were just about normal. My progress through the spring and early summer of ‘07 was slow but steady, no doubt my progress was slowed down my the anemia. By Oct. ‘07 I was able to actually let myself believe that I just might beat the SD. I was getting back the use of my hands, both in flexibility and the pain in my hands was lessening.
In Jan ‘09 I completed my second year of AP and at this point I am doing well. My fatigue is way down, energy way up, the wrinkles on my forehead came back about eight months in to AP, the edema in my arms hands and legs is long gone, the strength in my hands is back and I can open sodas and jars now etc., most of my aches and pains have gone away, my teeth are back where they were, my reflux is almost non existent, my stomach in general feels much better, my strength in my legs and upper body is much better, and in general I have my life back. I still have a ways to go to get over “life interrupted” but I am getting there. The summer of ‘08 I was able to do many of the things that I had been unable to do the past two years; boating, fishing, clamming, swimming some, and more useful time at work. During the winter of ‘07-‘08 I was able to snowboard again after making one run the previous winter because I did not have the strength in my hand to close my binding.. This winter ‘08 - ‘09 I was back at the gym and the spring of ‘09 has been very good so far, lots of energy and my joint pain is very low. In fact my joints feel much better than they have in a very long time even before my SD went active. My Sed rate was 43 in March of ‘07 and in Oct. Of ‘08 it was 7, at my annual Rheumy check up in early May my SED rate was down to 2 and my hemoglobin was finally in the normal range. It had been just below normal since my GAVE episode.
Downside to this point. My Raynauds has not gotten any better but when my fingers are not spasming the circulation seems OK. While my fingers still spasm the rest of me seems to have a normal temp and I am not cold all the time. I seem to get a yearly Herx in Jan. It is sort of an itchie rash type herx and lasts about six weeks. While uncomfortable it is nothing compared to the pain I had with SD. The good part is that after the herx is over I always notice that I feel better than before the herx. The minocycline makes my stomach a little more active than before but that has not been a problem as a matter of fact that has gone away in time. My middle and index fingers on both hands are still curved but I have noticed recently that my ring finger on both hands is very straight now when I try to straighten my fingers. Previously I think they had a slight curve
Currently I see my Rheumy in Boston once a year in the spring and I try to see my GP every three months or so. In March I celebrated a birthday that two years ago I felt that there was a better than even chance I would never see. Not to be melodramatic but that is where I was at that point. I know that this could possibly all change but for now I am grateful I have shown much improvement and been able to move on.
Update as of 10/04/09. Still have curvature in my middle and index fingers on both hands. The sensitivity is much better of late. They say that the first thing to be affected is the last to clear up and my hands and loss of strength were the first SD issues. Strength has come a long way and the hands don't really bother me all that much. Last spring I began taking an 81mg asprin with my morning mino dose. I feel that has helped considerably. I had to take it slow with the history of GAVE but so far no sign of bleeding or irritation. Had a great active summer and got to do alot of things that had fallen by the wayside the past three years. Today I was able to SCUBA dive again, I checked out my dive log and the last time I went was five years ago. It all went well and was good to be "wet" again. I had enough wetsuit to not get cold and was in the water about an hour. Still not back to pre SD but closer all the time.
Have you read the book by Henry Scammell--Scleroderma The Proven Therapy that Can Change Your Life?