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tintin

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About tintin

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  1. I have also had this for years. For most of my life my resting BP was 80/50. Generally exercise, standing up, sitting down, stopping an activity abruptly all makes it worse. My BP has gone up (thank goodness) as a result of a number of medications and is now more like 90 to 100/60 to 70. From what I have been told your levels of various neurotransmitters have to change rapidly when you start an activity, if your PB is typically low anyway, and your body does not adjust quickly, you get dizzy. If you do a search on Dysautonomia (autonomic dysfunction) you will find various references to this problem. Inappropriate pupil dilation is one of the more interesting symptoms that has the added effect of making doctors think you are a drug addict.
  2. I have been taking it for a few years, and like it a lot. I had problems with some of the other meds that help with fatigue, as they made me feel like I had just had 10 cups of coffee. I do however think that everyones biology is different, and I had issues with hypersomnia long before I had systemic sclerosis. Plaquenil also helped me a lot with fatigue.
  3. Sounds like your rheumatologist thinks you have Poststreptococcal Reactive Arthritis. The fact that your second set of labs showed no improvement in your RF and some new antibodies as well would make me nervous. I think it is quite common to have an autoimmune disease triggered by a virus. My SSc started after a bout of the flu. You might want to get a second opinion on your labs.
  4. When I was in high school I accompanied one of my friends to their house after school. When we got there I meet his mother for the first time. She was obviously very ill, and started yelling at him from the top of stairs. She had lupus and had been waiting for some time for the help she needed. A year later when she need regular help I was surprised to find out that she remembered me, and asked if I would be interested in helping her after school. So for a little while before she died I helped her. She was a wonderful person, and although she could fly into a rage when she was tired and in pain, it never prevented me from seeing who she was underneath. She was interesting and had a lot of good stories. I don't think she knew that everyone still loved and admired her. No one expects people to be perfect when they are sick.
  5. I am in the same boat, and have had an awful time finding things that worked. Fioricet works for me as well, however I only use it if I am desperate as you can develop a tolerance for it. As preventives I take beta-blockers, and Flexeril. I have generally found that anything that raises nitric oxide makes it worse and anything that lowers it helps. This is not too good as nitric oxide helps keep your vessels dilated, something that is probably good for SSc.
  6. I think these jaw problems are related to the Systemic Sclerosis. I have also had some issues, but not nearly as bad as yours. For me it is mostly at the dentist. I had been thinking that I would give up on having my teeth cleaned. It seems ridiculous that a teeth cleaning can wipe me out for the day. However, my dentist suggested using a rubber wedge to prevent me from straining so much to keep my mouth open. This helped a lot with the pain. I suppose one could use one of these wedges for brushing as well. Not much help for talking, I guess it is a good thing that we can all type.
  7. Thanks for the advice jefa It is definitely the more then one doctor issue that make it hard for me. Since there is no coordination between the migraine/pain doctor and the rheumatologist the decision is left up to me, and I don't really feel qualified to make these trade offs.
  8. I am very confused, my hands are puffy and I ache all over. I am also having daily headaches. I don't know if this is a result of the Systemic Sclerosis or if it is a neurally mediated pain perception issue. I am on a number of medications for migraines and central pain issues, however in general these are not recommended for people with SSc. For example I take 280mg of a Beta blocker, which has no effect on my blood pressure, but works well as a migraine preventative. It is however recommended that SSc patients avoid this drug. I realize that these are not issues people on this forum can solve, however I just need to collect my thoughts and figure out what to ask my rheumatologist, who I see on Monday. I am also wondering if there are other people who have SSc and migraines or unrelated central pain and low blood pressure. If anyone else deals with this, how do you manage the conflicting treatment recommendations? Long before I was diagnosed with SSc I had Neurally Mediated Hypotension, which was accompanied by nearly constant headaches. From the age of 18 my resting pulse was 100+, my blood pressure was 80/50, and I had lots of dizzy spells and micro blackouts (frequently synchronized with my heart beat). Because of this long standing blood pressure issue my vessels are tiny. In the past nurses who were familiar with me used baby needles to draw blood. Maybe I am over thinking and worrying about this too much. I always want an optimal solution. When I was in the cafeteria the other day, some one commented that I was obviously a computer scientist as I buttered my toast. I looked up confused, and he then explained that only a computer scientist would be so careful to butter all the edges so evenly. This is obviously not true, any perfectionist would do the same, but his point was not lost on me.
  9. Hi, I will give you one more experience with implants. I had one and it is a fine strong tooth. However, I was diagnosed with Scleroderma in the middle of the process. I had two problem. For one it took a very long time to heal, additionally one of the bone grafts failed. When I told my dentist that I had just been diagnosed with SSc. The first thing he said was "I knew something was wrong". Anyway we decided not to try a second bone graft, so it does not look as good as I would like, but it has not given me any trouble once it healed, so I am glad I did it.
  10. I have been waiting to hear how things went. I am wishing hard for a full recovery. To that end I decided to make a wish boat. So I made an origami boat and wrote my wish for peanuts recovery on a note and put it in the boat. It is now floating down the river to the ocean and it will hopefully make it to all countries. It is a tradition in my area to write wishes and requests on a piece of paper and cast them into the sea. The boat was an add on.
  11. I guess I just need to limit myself to a certain amount of time and then see how I am the next day. I find that very hard to do as I have so many demands on my time. Actually, I think it is impossible, I just have too many things that no one else can do. I can't ask my sister with MS, or my Brother with Rheumatoid arthritis, or my 79 year old mother for help. I also can't help thinking that I better get the new roof done, and the sea wall built before I don't have the stamina to supervise these projects. I'm a bit of a lemming running towards the cliff.
  12. Once or twice a week I have a day that involves a lot of running around. Basically a day I would not have thought twice about a year and a half ago. I usually feel fine on the day I am doing the running around, however I can hardly move for the next two days. It seems to me that if I don't get some exercise, I will just slide down hill. However, on the other hand a modest amount of exercise seems to wipe me out. I really want to rock climb, kayak and do all the things I was doing two years ago. Ok, I am digressing into wishful thinking. If I ask the general question "is exercise good?", I will get the standard answer "yes". But if I feel rotten after, is it still good for me. How much can or should I do? When is it good for me, and when is it bad? What about during a flareup? :unsure:
  13. For me my skin just starts burning, it feels like someone peeled all of my skin off. The only thing that I have found that helps is a cold shower. I decided to take my temperature during one of these episodes (before the shower) and found that my temperature was 95. I did this on other occasions and it was always the same. So there I am burning up with a temperature of 95. Its just all wacko.
  14. I must agree I get frustrated with all of the different opinions on what the tests mean and how to diagnosis SSc. I was told that ACA antibodies do not occur in healthy people, and that depending on who you listen to it can indicate Limited SSc in between 65% to 95% of cases. On my lab results the lab added a note saying the results were diagnostic. Anyway as far as I can tell I have between no and very few skin symptoms. However that does not seem to prevent me from having Calcinosis, Raynaud's, reduced lung function, dysmotility, joint involvement and muscle involvement. My doctor said it can take from 5 to 10 years for the skin to become involved in LSSc. My sister has MS and the National MS Society has a set of treatment recommendations. She finds this a very helpfully resource when choosing between her doctors various recommendations. I referred to the NIH Consensus report for the treatment of hyperparathyroidism when deciding between different doctors recommendations on what I should do for this. We need an effort by the leaders in this field come up with similar guidelines. Too many doctors know nothing about this disease and have no idea how to diagnosis or treat it.
  15. That is so depressing, I can not think what to say. I have however heard good things about cyclophosphamide, so take heart there are other routs to keeping this disease at bay.
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