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Everything posted by Piper

  1. Hi Summer, I can't really say as I don't have a diagnosis of scleroderma, just fibro. I do have a long list of symptoms as well as the R,E and a couple of T in crest and also a positive ANA for years in a nucleolar pattern. Maybe more invasive tests like a cardiac catheterization could tell for sure but I guess the main thing is the symptoms are treated. Hugs, Piper <3
  2. Hi Summer, I am also on Atenolol for tachcardia and PVC's. It does make my raynauds worse but as I also have wicked migraine with aura it is a balancing act to find something that doesn't make those worse. I rarely have the PVC's now and my pulse stays down in the high 60's. :emoticons-yes: Hugs, Piper
  3. Hi Andrea, I just wanted to say that I'm also in the same position you are and have been here for about 10 years. Not easy, my heart goes out to you. I take comfort knowing that my disease can't be very severe or it would have been diagnosed by now. My doctor has it on his radar and monitors it. He has told me I have a grumbling disease and for now we call it fibromyalgia. The funny thing is I have had a positive ANA for the past 10 years (nucleolar pattern for the past few years) but just recently had a negative result for the first time. I did however have my first positive RF. Like the others have said you have a very good doctor. The folks on here have been a great support for me over the years. You are not alone. :emoticon-hug: Hugs, Piper
  4. Hi Helen, I attend a fibro support group. As I don't have a definite diagnosis I wouldn't feel comfortable attending a scleroderma group yet but I also have fibro so I go there. We meet in a resteraunt for lunch once a month. Mostly it's a day out as no one in the group feels up to doing much more. One member researches and brings in all the latest news on fibro and we all commiserate with each other. I really look forward to it. There are several in the group who are also dealing with more than fibro. Hugs, Piper
  5. My sleep has improved greatly since starting amytriptylene 10 mg. at night. It sort of makes me numb and I don't have the aching that used to keep me up.I also get into REM sleep and dream more. Some nights it's not enough and I take a NSAID also and this seems to help, for now. For me it was pain that was preventing me from sleeping well. A friend of mine with scleroderma also told me how to place my pillows and wedge properly so night time reflux is not as bad as it used to be.
  6. Hi Mando, I feel for you hon. Not having a diagnosis is one of the hardest positions to be in and I'm sure many on here have been in the same position at one time or another. I find myself depressed at times also especially when I start thinking it's all in my head. My doctor reassured me that there IS something wrong and called it a grumbling or smoldering disease. My worst problem lately is stamina. :( It's nice to know that you're not the only one in this position. Hugs, Piper
  7. Hi Mando, Your post caught my eye as I've been having the same tightness and drawing in of my palms for a couple of years now. My G.P told me I should stretch them and I think this has helped them from getting worse. I do not have a diagnosis of scleroderma however I share many symptoms including severe GERD, Raynaud's, arthritis, fatigue and dry eyes and mouth. I have also had a positive ANA for the past 10 years with a nucleolar pattern in the past couple of years, low WBC and higher creatinine. Whatever is causing mine is happening very, very slowly and I'm thankful for that. Hugs, Piper
  8. Hi, I have them on my face but also on the tops of my feet. Anyone else have them there? My Dr. told me the ones on my feet were from raynauds? Hugs, Piper
  9. Hi Vanessa, I also have a very dry mouth from time to time and must drink everytime I wake up as my tongue is stuck to the roof of my mouth. What is worse for me is when my eyeball is stuck to the eyelid and it won't open. :blink: Thankfully this only happens intermittantly. Try taking some water to bed with you. Hugs, Piper
  10. Hi Kaytee, I had one on the last joint of my middle finger. It got quite big and sore. I accidentally whacked it one day and it went down so I'm thinking mine was a cyst as well. I have many nobbies on my last joints from osteoarthritis. Hugs, Piper
  11. Hi All, Just wanted to say I'm in the same boat as I've had symptoms for over 10 years, 2 rheumatalogists and still no definite diagnosis. I've got to the point that I don't go to the Dr. anymore. I figured I can't be too severe or I would have had a diagnosed by now. I just take day by day and try to get on with my life. Sometimes that's all you can do. Best of luck with your appointments. Hugs, Piper
  12. It causes me to crave sweets and carbs. The pharmacist recommended eating a fruit when I get those cravings ( which are most of the time). :rolleyes: Hugs, Piper
  13. Hi Lucy, That is too funny because I thought that I was also picking up some electrical pulses from somewhere. As my husband is an electrician I first thought maybe he was giving off something in bed at night that he'd accumulated during the day. lol That is exactly what it feels like. You are not alone. Hugs, Piper
  14. Hi Sam, I know what you mean by electrical impulse feeling. I used to get this in my knee area and it went sort of like this, buzz....buzz.....buzz. I went for physio therapy of my knee because among other things my MRI said I had a torn meniscus, acl tear and chondromalacia. When I told the therapist about the electrical feeling she massaged down the front of my shin. Wow, there were some painful spots there but she said they were knots in the muscle. After several weeks of massage in that spot, I no longer have that feeling. I assume something was pressing on a nerve. I hope you find something to help yours because it is very annoying. Hugs, Piper
  15. Hi, I've been on amytriptylene and also atenolol (for fast heart) for a few years now and the combination of the two has really helped with my migraines. The only time I get one now is when I try to go off of the amytriptylene. I think it also helps my pain levels and I sleep better. I have gained over 20 lbs since I started taking them though. The atenolol causes my raynauds to be worse so I guess you have to weight the pros and cons of any drug you take. For me, not having migraines is worth the weight gain and sluggishness. Take care, Hugs, Piper
  16. Hi, I have only been diagnosed with fibromyalgia, along with the RET so who knows what's brewing or how long till I get a diagnosis of sclero...if ever. Hugs, Piper
  17. Hi Sam, I get the numb arms at night also but I also have a terrible pain for lack of better word from my knee to my toes at night. It feels like you've hit the funny bone in your elbow. Terrible feeling. My doctor. said it was coming from my back and didn't seemed too concerned. He told me to take 2 elavil instead of one. Hope you find something to help. Hugs, Piper
  18. Hi Clem, Well, I don't have a diagnosis and the last time I had blood work done it was all normal (first time in 5 years) so I guess he figures there's nothing wrong with me and it's not good to take nexium too long. However, when I had my EGD done I had erosive esophaghitis, gastritis and a hiatal hernia. I still have pain in my back every morning so I hope I don't end up with Barrett's or more difficulty swallowing. Hugs, Piper
  19. Hi Clem, My husband also had a problem with the bed being up so high so we compromised. We put the head up only one brick (about 2-3 in.) and then I put a foam wedge of about 5 in. on top. I use a very soft cushy feather pillow ontop. This way the bed isn't up enough to hurt his back and I don't have to use such a high wedge because I'm always sliding down the bed when they're too high. I put holes in my bottom sheets from pushing back up all night. I also use a small pillow under my knees. Hope you find a solution that suits you both. My Dr. wants me to go off of Nexium and I dread what's going to happen when I do. Hugs, Piper
  20. Hi Eileen, I'll be interested to know if anyone else has had these changes to their palms because I have had hardening of my palms as well. They are also drawing in. Didn't know about the connection to cancer, yikes! I thought at the beginning that mine might be connected to Duputryen's as my father had this. My Dr. says no because my whole palm is involved and not just near the fingers. Then there's the fact that I have raynauds and a scleroderma like esophagus. I don't have a diagnosis though. Hugs, Piper
  21. Hi Mando, Like the others have said I would keep an eye on it myself. My B.p started to rise a couple of years ago and I could also feel it (even though they say you don't). I went to my Dr. several times and each time it was rising. I was put on a med for it and have been fine since. About that time my creatinine shot up and GFR which is a reflection of kidney function went down. It has been stable since I was treated for it and I check it regularly when I'm out on those machines. I try to use different machines each time in case they are not working properly. Hugs, Piper
  22. Hi Danette, I get shooting pains in the tips of my fingers from the last joint up to the tip. Sometimes they're so severe I have to hold it tight with my other hand to stop it. I do have arthritis in the last joints so mine could be from that. Do you have raynauds or a neuralgia? The tingly feeling could be from both. I wake up with my hands numb and tingly. Hope you find something to help. Piper
  23. Hi, I've had Raynaud's for a few years but not very severe as I've never had any sores.It seems to come on when my whole body is cold and not just touching something cold for instance. Lately the faty part of my palm below the thumb goes blue and sometimes when I'm in the shower and I look down my lower legs and feet are completely blue. Could that be Raynaud's? Anyone else have anything like this? I can't remember where I read that you only need a two colour change to be diagnosed with Raynaud's and it could just be white and red. Piper
  24. Hi Sweet, I asked my Dr. about it as I have fibro and was told that it is being used for everything and anything lately and hasn't been approved for fibro, so ....no lyrica for me. Guess I have to stick to the elavil, which does help some but also causes weight gain. :( Hugs, Piper
  25. Hi Lizzie, I've had a problem with my left eyelid for the last year so I know what your talking about. When I sneeze or cough it's slow to open and when I'm tired it's noticably lower than the other one. I mentioned it to my g.p who just ran some blood work and I have to go back next week so I'll let you know what he has to say about it then. Take care, Hugs, Piper
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