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Bunky

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Posts posted by Bunky

  1. Thank you all so much for your kind words. It has been a crazy, scary time, but my dad is much better, so thank goodness for that. My sister-in-law has a long road ahead, and my husband and I will do everything we can to help, but I've got to get myself more functional so I can be of help, so I really do appreciate the support and advice. I'm hoping for a more definite diagnosis, and tests to determine the extent of my internal involvement, and then of course a treatment plan.

     

    Thanks again,

    Bunky

  2. Hi, here's an update on me.

    I finally am going to the sclero specialty clinic at the University of California San Francisco (UCSF) hospital on Monday. I was supposed to go last month, but my dad had a heart attack and then my sister-in-law was diagnosed with cancer, so I was out of town for 3 weeks. Right before all that (end of April) I had a sudden raise in blood pressure, ended up in the E.R. with a reaction to the blood pressure meds the on call doctor gave me, and I was supposed to see a cardiologist to make sure my kidneys and heart weren't being affected, but the cardiologists in my area wouldn't see me until the end of June. Very frustrating. So I will see the sclero dr. and hopefully they will help me deal with the blood pressure issue. (It's still elevated.) I really am hopeful it is not sclero related, and no damage has been done by waiting this long to have it all checked out.

    I have to admit I'm nervous, because I've been feeling pretty rotten. Severe fatigue, shortness of breath, and lots of pain in my hands and arms, the reflux has been worse, etc. I've been dragging myself to work and my kid's numerous activities, and then doing nothing when I get home. My kids would like me to actually cook dinner, but I don't have it in me. Well, maybe tomorrow.

    So much for my fitness routine. :)

    I'm bringing my husband to the appt. and we're both hoping for some definite answers, although do I really want to know?

     

    Take Care,

    Bunky

  3. Hi Luvbnmom3,

     

    I've had similar symptoms in my abdomen and upper legs, where I think my phone is vibrating, but I don't have my phone. I have it most often in my lower abdomen. Its like a spasm I guess. I haven't mentioned it to anyone before, but I see a sclero specialist in a week, and I was planning to mention it then. With so many questions and weird symptoms to ask about, I won't even know where to start! Anyway, I hope you figure this out.

     

    Take care,

    Bunky

  4. I have elbow splints for ulnar nerve compression that I wear at night. They were given to me by my hand orthopedist. They have helped a great deal. I have chosen not to have surgery, but to splint long term instead. If I forget to wear them for a while, the pain level and numbness increases. They are made to keep my elbows mostly straight.

    I sometimes where wrist splints when my hand/finger pain is bad. It seems to help somewhat, although I don't seem to have carpal tunnel.

     

    I hope this is helpful,

    Bunky

  5. My doctor has me walking 40 minutes a day 5 days a week, which most days are very doable, plus my dogs like it, but some days or weeks my fatigue level is too much, and I know I can't do it. I am working up to jogging, and then hoping to start running again. I've been asked to coach track next year, so I want to be able to run with the kids, not just to tell them what to do, but to show them. I have nine months to get to that place, so wish me luck! I'm determined that I can still do all the things I want to, with moderation and balance. Of course, with this disease I will probably get knocked flat on my rear more than once, but if I keep on trying, I'll get there eventually. OK so that means get off this computer and go on my walk/run.

     

    Bunky

  6. Lucy, Barefut, Shelley, and Barbara,

    Thanks for your input. It gives me hope that maybe I can continue to protect my family with insurance. I will look into it.

     

    Lucy and Tru,

    I'm so sorry you are going through this disease without the support of your sons. Hang in there!

     

     

    Bunky

  7. So here's a loaded question--has anyone applied for life insurance AFTER being diagnosed with sclero? I have a term policy that will expire in a few years. I just assumed that would be it, I wouldn't be able to get insurance anymore.

     

    Bunky

  8. Margo,

     

    I'm 39 and I have one patch that is about 4 inches by 3 inches, but the rest are much smaller. The large patch was the first one, and about 4 months later I started getting more. They looked like red bruises when they first came out, and then slowly turned brown. When I was diagnosed with morphea I started researching and realized I had many symptoms of limited, but my doctor here doesn't feel comfortable giving me a diagnosis because she never heard of scleroderma until I was diagnosed with morphea, although she is very supportive. She was very glad I found an expert and we are both anxious to hear what they have to say.

     

    Take care and feel free to send me a private message if you have more questions.

     

    Bunky

  9. Hi One,

     

    Welcome to our forum, this is a great place for info and support. I was diagnosed with morphea a little over a year ago. I also have Raynaud's, but didn't know that was what it was until after my diagnosis. Mine is mild but increasing in severity, and my nailbeds seem fine. I have negative ANA's, but I also have moderate reflux, mild telangiectasia, shortness of breath, and a few years ago had tight shiny skin on my hands, and curling fingers, but they have softened. My primary care doctor suspects limited scleroderma, but doesn't know enough about it to give me an actual diagnosis. I was supposed to see a scleroderma specialist this week, but was out of town due to a family emergency. I am waiting to have the appointment rescheduled. It will be very interesting to me to hear what the specialist has to say.

     

    My morphea is on my trunk and chest area (I have 34 patches) but is considered "superficial, non-classical" as it is very mild, and most patches have burned out and are just brown scars now. What are the characteristics of your morphea?

     

    Hang in there,

     

    Bunky

  10. Thank you Celia and Peggy,

    I found out what was causing it all. I was low on Potassium. It made my blood pressure shoot up very high, so I finally went to the dr. They put me on a blood pressure med that I had a very bad reaction to, and ended up in the emergency room last night. That's where they discovered I was low on Potassium, gave me a pill, and the pains are gone! Now I just have to live through the yucky B.P. drug reaction. They say it will be out of my system by Friday afternoon. Thanks for all your help,

     

    Take care,

    Bunky

  11. Tru,

    I'm sorry you are going through this. It has definitely been going on too long! You must be ready to scream. Hives are sooooo uncomfortable! Sending hugs and hope that you will get some relief soon. Let us know how it goes tonight.

     

    Take care,

    Bunky

  12. Hello Celia,

     

    Well its been a long time since I had growing pains, but this is different than anything I remember. The pains cover a small, very defined, shooting area deep inside the joints, usually last only a few seconds to a few minutes, and then move to another joint. Very weird.

     

    Thanks,

    Bunky

  13. A few months ago I started having intermittent shooting pains in my right ankle. This is a new type of pain for me. If you have ever had a blood gas taken from an artery, that is what it feels like. Very sharp, defined, shooting pain. I would get it every now and then, sometimes when I'd be having a Raynauds attack (it's always worse in my right foot). Now I've been getting the same type of pain in my some other joints--knee, elbows, wrists, fingers. And I've been having them much more often. I'm just wondering if anyone else has experienced this, or if I'm just a freak like my family would say (lovingly, of course). It seems different from the joint and body aching from fibro. Any info would be appreciated.

     

    Thanks and take care,

    Bunky

  14. I'm sorry you are going through this pain. I hope you can find some relief soon. For me, like Sherion said, when my fibro is acting up I find heat can be the most comforting. Massage can hurt so much, but it can be relieving after its over. I use a heating pad, or rice bag, and drink hot tea. When my fibro was the most severe, the dr. prescribed a seratonin reuptake inhibitor, and it helped with overall pain management. I only took it for a short time, but I haven't had a relapse of that constant severe pain, only flares, since I went off of it, and it's been four years.

     

    Take care,

    Bunky

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