Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About JohnJ

  • Rank
    Bronze Member

Profile Information

  • Location
    St. Louis Mo.

Recent Profile Visitors

1,205 profile views
  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 h
  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 w
  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 fi
  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, espec
  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 fin
  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
  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 abou
  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 purp
  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
  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
  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 m
  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!!
  • Create New...