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Everything posted by JohnJ

  1. I too appreciate the knowledgable responses, thanks to all. I'm going on my third year, and wasn't even aware of such reviews. I obviously had no idea what was happening to me back in 2006/07 but was subsequently diagnosed, had a digital rays amputation and sympathectomy procedures. I just know if I would have tried to continue working in my field as an auto technician, I would have surely lost more digits, and exacerbated the symptoms, especially the Raynauds with all the stress that comes with helping to run a repair shop. I still am experiencing a great amount of stress as my wife has been so sick that she hasn't been able to work since 2009 with her own health issues, namely a hideous problem known as chronic fatigue syndrome (CFS), and fibromyalgia (FM). It's bad enough trying to make ends meet on 1/3 of what I used to earn, but now I have to pay cash for her meds, and doctors. appointments while she appeals her own SSD case, that was recently denied and on appeal to the AP (Appeals Council). Life ain't so grand living with health problems and stressful in their own right, but I try to look on the bright side, we have each other and take turns supporting one another through our difficult days. If you folks thought we had a hard time convincing the Social Security Administration (SSA) we truly are very sick and have a disabling disease, ask anyone who has CFS or FM how hard it is for them. The administrative law judge (ALJ) who denied my wife seemed to think that CFS can be "cured" by taking a few pills during a lunch break and all is miraculously well again! I could go on but suffice it to say that I agree with what another poster said so well, that is that SSA put you through the ringer the first time, and there is no cure for what we are afflicted with, so "forgetaboutit" and don't worry: your chances of being kicked out of the scleroderma disability "club" is next to nil. Best wishes to all and may you find some solace in knowing you aren't alone.
  2. I can tell you that like your husband, I too have stomach issues with severe cramping, and take stool softeners because of the the pain meds I take. Back pain is an everyday occurrence for me as well. I have 2 bad disks from a car accident and work injuries I sustained years ago, I also think any gastrointestinal complications and pressure involved with my stomach/digestive tract symptoms would also put pressure on my herniated disks and cause the pain in my lower back, but I'm not sure, it feels like it at times, as the back pain subsides when my gastro issues do too.. I wish your husband well, please tell him he's not alone and that there are other men suffering (mostly in silence I imagine) like us with this disease.
  3. This for me is the absolute worse thing about this illness. I have been on 50mg. tablet of Viagra daily, but only take it when I have really bad flareups, as it causes headaches. I tried the Nitro creme and like the Viagra, it causes severe headaches. I also have had 4 digital ulcers in the last 3 years which last about 8-9 months; this was after I had a right hand index finger amputation, and sympathectomies on both hands. All of my ulcers started after hitting my hand/fingers doing mundane things like reaching for something, or household chores. The stress from being fearful of hitting my fingers accidentally is maddening. For what it's worth my attacks come on everyday shortly after getting out of bed and cold temperatures from my wife blasting the air conditioning in the summer, or from the cold winters here in Missouri. If I could I would move back to Florida, as I had less attacks, lots of sunshine to keep my vitamin D levels up etc..But I couldn't find a doctor or clinic to treat me like the folks at Barnes Jewish Hospital in St. Louis. I hope you find some relief, and take care not to injure your fingers.
  4. I couldn't agree with you more Sam, I too feel your frustration over SSD. I just started my fight with them in August, and got my "automatic" denial and have since hired an attorney. I thought about doing work as a check out clerk, but the Raynaud's and ulcers on my dominate hand hardly allow me to count my own money (what little I have). I plan on posting updates on my process with SSD. If we all can contribute our experiences we can learn how to fight them better. I do have one question though, are you having problems with your hands?
  5. Wow I truly commend you, dealing with this and raising children on top of it :o I feel bad when I am in a foul mood and my grandson is around, but I just try to roll right along and put my problems to the side. It actually helps teaching him to play the drums, as I concentrate on something other than my pain. Bless all you moms out there :)
  6. Sympathectomy is a surgical procedure that destroys some of the nerves to increase blood flow and decrease pain in certain diseases that cause narrowed blood vessels. I have already had a digital one done at the same time my right index finger was removed and it seemed to help, but did not last long as I have had the Raynaud's's manifest itself on my middle finger, on the same hand starting in July just past. This time they are going to deal with occlusions in my right arm, and palmer arch. Lisa, I think my ulcer/s won't heal because an angiogram shows much clotting/occlusions, especially along my right arm and hand. I wish it would heal. I was hoping they could do the above mentioned procedure, and perhaps do the re-plumbing in the hand, and see if the extra blood flow would enhance the healing process. That sounds like a plan to me. Oh and the time released pain med is wonderful, it is really helping a lot, and I've managed to sleep all the way through for 2 nights in a row :)
  7. UPDATE- I saw the Rhuematologist a few days ago. I went prepared to ask my questions, and she was very prepared to answer all of them. She looked me over, and according to my angiograms, she advised a surgical consult regarding partial amputation to remove my digital ulcer (DU), and discuss having a sympathectomy, and vein grafts. We found an increase of Telangiectasias on my back and 3 new ones on my cheek. She also ordered further testing, including blood tests, x-rays and the like. Also I needed to increase my Viagra dosage, and switch to a different pain medication. Unfortunately, my financial resources are limited. I explained that I was turned down by SSD, but she seemed confident that her report will help validate my claim on appeal. I also followed up with my primary doctor, and we changed my pain meds to a time released one. I did not want to do this but I was going through my other medicine too quickly, and there were concerns of liver toxicity. So all in all, I was pleased with the knowledge she displayed, but I am not looking forward to having a 3rd angiogram, and a 3rd amputation, and sympathectomy. Oh yeah, keep the stress level down too. That is easier said then done, considering most of my stress is because I cannot work and going through a financial hardship because of this disease.
  8. Well thank you all for the suggestions, I am excited to have the opportunity to see someone who possibly could do more for me other then give me pain meds. The XRay taken last week has come back clear as far as any bone infection or irregularities. I have been reading about Tracleer, and read a story about a 44 yr. old female patient who had 3 DUs on her left hand, after 8 weeks taking 62mgs twice a day, they were substantially healed. I think I would like to try this medicine before I settle on another amputation, as long as my liver cooperates. I can't believe this one sore on one finger has rendered my right hand nearly useless :blink:
  9. Craig, I can attest to what you are saying. It's been 2 days in a row, that I have banged my hand/finger, and each time almost my entire hand turns white, and is very painful. Two days ago I was merely turning the faucet knob on the kitchen sink when it slipped and hit the wall, and last night I hit the tip of my finger with the finger nail of another finger on my left hand while lathering in the shower and it was a bloody mess! I let out a yell and more then a few choice words as it feels like a window has slammed down on it, over and over again. Each time the hand turns white and takes about 15-20 minutes to turn normal color again. I have decided to keep my finger protector on, covered by a brown jersey glove on top of that at all times now. I also notice that even getting up out of bed I have a daily morning attack, and was told that it could be due to changing blood pressure. I'm ready to ask for a trial of Tracleer, and if that doesn't help I will request another amputation.
  10. My younger brother was on TV on 11th Nov. on a show entitled "Heroes At Home". It is sponsored by a major department store, and hosted by Howie Long, the famous football player (American). He and 5 other service people were treated to a home make over of sorts, while he was doing the interview, little did he know he would come back to a house full of furniture and needs for him and his new wife and baby daughter. It was quite touching, and made my eyes swell with pride and emotion. Him and his platoon were ambushed last year, the Medic was killed, and his Sergeant was shot. He was given a purple heart, and silver star medals for dragging his Sarg to cover essentially saving his Sergeant, while he took a bullet in the left foot that has rendered him to wheel chairs and crutches, while under going 5 operations. He is an inspiration to me, and when I have bad days with my disease, I think of him and his struggles and that keeps me going. Bless our service men and women, no matter what we may think of the wars, and our politics.
  11. Thanks for the tips ladies. Debonair susie mentioned I might have an infection. Last week my primary doctor had me take some xrays of the hand to see if I indeed had a bone infection. I mentioned I thought it looked like the stuff on the tip of the finger might be calcinosis and he brushed it off, and told me to not read too much into what I pick up on the internet, but I have learned more from this site and you folks then anywhere else! The pain is really bad today as a result of banging it while turning the water knob on the kitchen sink, and that was yesterday! While I am in pain, the Raynaud's attack is really severe. How does SSD expect me to hold a job? Anyway, I plan on making a list of everything that has occurred to date and will start a journal so I don't forget things in the future, I have also kept my cell phone along side me so I can take pictures of the attacks as well as the ulcer on my digit. Thanks again everyone, I feel better knowing I can come here and find some comfort and rant a bit. Bless, JohnJ
  12. Well at last I will see a specialist on the 18th of Nov. Can you folks give me a list of some things of what I should be asking, perhaps further testing and such? My symptoms have gotten worse, and I have severe Raynaud's attacks daily, and my middle finger on my right hand has a sore with a hole in it filled with a yellow substance, that is extremely painful. I take Viagra, a prescription pain reliever, and Prilosec for my worsening heartburn. I have noticed my fingers on my left hand starting to exhibit Raynaud's, as well as my toes, and I feel pain in my elbows and finger joints. I feel like a mess, and I was turned down by SSD I think partly because my medical records were not updated with the new diagnosis. Any suggestions would be greatly appreciated, thanks, JohnJ
  13. Hi guys I hope you are well as can be. I'm bumming today, I had to turn down a job offer because it consisted of putting furniture together, and carrying heavy appliances, and I can't go grasping anything like that without excruciating pain. I still have hope of landing another position I applied for at an auto parts store, mostly counter work, but I'm running out of time and the bills are past due. I am going to put my Mustang GT for sale online today and hopefully sell it to make it through the winter. I love my Stang, we've been together a long time but I am having trouble coming up with money to pay the bills and I also need 200.00 to see the Rhuemo next month. I'll work it out somehow. The pain in my fingers is really bad this morning and radiates up to my elbow. It's time to hit the ol pain meds. I wish everyone a good day.- John
  14. JohnJ

    My best buds

    Kujo and Nina
  15. Thanks again to all of you for responding and welcoming me aboard, I plan on sticking around for sure as you all sound like a terrific bunch of folks! Hey KarenL, I noticed you said part of your digit fell off! How in the world did you tolerate that. It must have been PAINFUL! How does that happen? Is it like waking up one day and there it is on the side of your bed or something? That is really freaking me out!!
  16. Craig- Regarding pain management, I steadily rose up the ranks by starting out with the typical NSAIDS, and then on to stronger stuff.I wish I didn't need this stuff but I'm learning to manage myself fairly well. And as far as work goes, I am trying to find something in my field, perhaps commercial sales, and some customer service/parts counter sales so I wouldn't have to turn wrenches or perform the physical exertion I had to before because that is out of the question. My mechanic days are regrettably over, But I could help you pick out the best brake pads for your application! I just received a call today from NAPA auto parts and they said to expect a call later in the week :rolleyes: Do you think that will cancel out my SSD application process? And if I get this job and it doesn't work out will I have to start the whole process over again?
  17. Peggy, you sure are right about the fatigue. I have been noticing I feel more tired after doing things that would never have made me feel tired. I take vitamins, including fish oil and C. The thing I hate the most is not being able to use my right hand to fix things. Even opening a door takes cautious thought so I don't hurt it, if I do the whole hand turns white and it really hurts. I sure have made good use of my left hand as a result, I don't have any ulcers associated with it, knock on wood.
  18. Thank you all for the warm welcome, wow, I truly feel blessed to have found this site and all of you as well. I have been on the phone today with my kids explaining to them as best I can about CREST, as they are worried. After reading some of the stories on here I guess I was diagnosed rather quickly compared to most. As soon as my doctor mentioned Raynaud's I was on the net searching and learning, and I asked to have the ANA test done, and that lead to the ENA and the diagnosis. I can't stress enough how important it is to speak up and ask questions and demand action when visiting your doctor, and learning all you can about this disease. At first I was bouncing from an Ortho, to a Vascular hand specialist, and I am currently waiting for an appointment to see the rheumatologist hopefully soon. All the doctors have put in referrals on my behalf. I lost my insurance in '07, so it was tough getting knowledgable treatment at first. The hospital I go to is great, and it's a teaching hospital so maybe they are attending to my needs because of the unusual disease that is in front of them? It has a clinic associated with it, and it has a good financial aid department, which I desperately need as I have been out of work. Lately, I was thinking that the Ortho who did the amputation and prescribed the Viagra, should have put things together and ordered further testing. But at the time it was being treated as a Workmans comp case since I got hurt at work. Maybe he thought if I was turned down by comp, he didn't stand to get paid? B) Although he and a plastic surgeon who saw me last week both think I have Hypothenar hammer syndrome as a result of banging my hand on automobiles for all these years, to go along with the CREST. What a strange turn of events. Oh well, one day at a time I guess. Hey by the way what do you folks use to protect your finger(s) from further trauma, I wear a half splint that has some cushion lining in it, but it is cumbersome. I would like to invent something that will insulate it better so I can work. Something along the lines of a rubber thingy that would be used for sewing or something like that! Any ideas would be appreciated! Thanks again.. Peace, John
  19. Hello Karen, sorry about your fingers I know what it's like having lost an index, and having an ulcerated middle finger. I haven't heard of Tracleer. I was given Viagra, same as Revatio, it is the only thing I currently take. It is expensive though, I'm hoping the Revatio is cheaper. <_<
  20. My fingers turn white, then red and I have lost one index finger to amputation and my middle finger has an ulcerated tip and it is probably going under the knife soon also. I just hope they can save as much of it as possible. I'll be down to having only my thumb, ring and pinky fingers if not. :rolleyes: Good luck to you.
  21. Hello everybody, my name is John and I am 46 years old, and a recent addition to the newly diagnosed club <_< I would like to take this opportunity to introduce myself and would like to tell my story, as it has been a difficult 2 years not knowing what was wrong with me until recently. I was an automobile mechanic for 30 years, always loved working with my hands, and took a lot of pride hot rodding cars and trucks, but that has changed dramatically because in November of 2006, while working on a customers car, I crushed my right index finger, actually more like strangled it cutting off blood flow. The digit had a crease mark on it and I thought nothing of it really, it hurt but it was a minor boo-boo in my opinion. Two weeks went by when I started noticing that the finger would be pale and then turn blue and would hurt a lot, then other fingers would exhibit this pattern, but they would clear up and I ignored it, not wanting to miss work. Well, in January of 2007 I couldn't stand the pain and went to see my primary doctor, and he about flipped out and sent me to get a doppler study which showed poor circulation. After that within 2 days I was in the hospital getting an angiogram. This confirmed I had almost no blood flow to the index finger and some occlusions in the hand. I was put on nefedipine, Viagra, and pain pills, and when I returned for the follow up the finger was turning black :o I was advised a partial amputation was in order and it was done. Well me and my stumpy couldn't get along very well because it didn't want to heal so on October 31 of 2007 a digital Rays amputation was done along with some sympathectomies. This worked well until July of 2008 when my middle finger (my newly designated index) started manifesting the same Raynald's symptoms, along with my ring and pinky fingers :angry: So an ANA test was done and that came back a very high positive, and the florescence was speckled, so more tests were done and I have limited scleroderma (CREST). My middle finger was severely ischemic, and has developed a painful ulcer, the nail is coming off and it HURTS LIKE CRAZY! :( I don't want to lose another finger, and I am hoping they can trim just the tip, and kill the nerves or something? I recently lost my new job of 3 months because of this so I applied for SSD and waiting for them to turn me down <_< I am grateful that it didn't turn out to be a more severe disease, but this has been quite a ride as all of you know I'm sure. I have some questions and hope some of you would kindly help me out with some answers if you don't mind. I plan on being proactive, but I'm having some trouble adjusting my life around this disease. I'm still going through the the mental stuff and get bummed out often. Well.. Thank you for your time and letting me rant. I hope you all are as well as can be, Best Regards, JohnJ
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