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Everything posted by Piper

  1. Hi, I'm not diagnosed but have many symptoms. Thank you Shelley for the sites, very interesting reading. I read under sclerodactyly that the swelling can be intermittent. My hands are hard and I can't make fist or spread my fingers............sometimes. Is this possible? Sometimes my hands look and move almost normally. Does anyone know if the tightening can be intermittent and worse at sometimes than others? I know that my hands are changing and are quite hard and shiny up to the first joint and also the palms are very hard. Maybe it is just the raynauds causing this. Sometimes I think I'm going bonkers and just imagining it. :unsure: I also have very swollen large knuckles all of the time. and I do get red dots in the palm, but these come and go as well.I also get the sharp stabbing pain in the tips of my fingers. Hugs, Piper
  2. Hi Barefut, I agree, take pictures. I had crop circles on my chest but when I went to the Dr. they had faded and he just looked at me like I was nuts. My hip also sounds like someone rustling paper when I walk up stairs. I think I should record that for him too. Isn't it frustrating all the weird manifestations these diseases cause? Hugs, Piper
  3. I got some last year and they are heavenly. Great for when the hands are aching with arthritis too. I watch t.v with them on. Hugs, Piper
  4. Piper

    What Was The Environmental Spark!

    Hi, This is a really interesting thread. Oh, and I'm another who played with mercury as a child. lol I believe my illness started from an e-coli infection. My father initially had contracted it from another person and I had a mild case of it from him. It eventually killed him after 5 years when one thing after another shut down. It was a very stressful time, looking after him and small children. It wasn't long after, that I started with joint pain and fatigue. We also have quite a family history of autoimmune disease with aunts and grandparents including rheumatoid arthritis, lupus, type 1 diabetes, graves disease and vasculitis. I also have a familial osteoarthritis that all the women in my family have including my teenage daugher.That I know is in the genes. Hugs, Piper
  5. Piper

    Meds For Esophageal Pain

    Hi Margaret, I'm so sorry to hear your son is having such pain. Please don't feel like you are not a good mom, you sound like you are doing everything possible to help him. I am no expert by any means but I do suffer from severe Gerd. This is just a thought but, I cannot take motrin as it makes my gerd pain much worse. I believe it is ibprofen which is an Nsaid or non-steroidal-anti-inflammitory. They are great for inflammation but can increase the acid in your stomach, at least they do in mine. I wonder if you stopped the motrin for a few days if he might feel better. Does he take something for his acid reflux? If he doesn't you should look into that with his Dr. and also take all the measures at night time to stop the acid from coming up into the esophogus. I really hope that you find something to help him. Take care, Hugs, Piper
  6. Piper

    Thanks To Everyone Who Replied

    Hi Cathy, I was just diagnosed with peripheral neuropathy like Heidi. My first 2 toes are completly numb and I have pain in my whole leg that was waking me all night long. My Dr. said mine was caused by the arthritis in my hip and knee. He gave me elavil to take at bedtime and it is wonderful in helping the pain.I also have carpal tunnel in both hands. Hope you find something to help. Hugs, Piper
  7. Piper

    Obstructive Sleep Apnea

    Hi Sheryl, I'm just joining in to say that I'm another who has a terrible urge to sleep sometimes during the day. I will be driving along and when it comes over me I have an awful urge to pull over for a short nap. If it happens when I'm at home and I sit down I'll be out cold for 20 to 30 minutes. After that I'm fine again. I've often wondered if it wasn't narcolepsy but I've never been tested for it. I don't sleep well at night either due to pain and lately peripheral neuropathy. My Dr. said it might be chronic fatigue as I also have fibromyalgia. I hope you find some answers to help you. Take care, Hugs, Piper
  8. Piper

    Hip Bursitis

    Hi Patty, I've had bursitis in the trochanter sp? bursa for years, in fact it was one of my first symptoms. I feel mine on the outside of the hip especially when I'm lying on it, very sore, even to touch and miserable to have. I also have true arthritis in the hip which I feel in the groin and down the leg. I take celebrex when it flares up and that helps some. Good to hear they're starting you on something for your heart. Take care, Hugs, Piper
  9. Piper

    Does This Make Sense (skin Stuff)

    Hi love, You are describing my hands to a T and I'm not diagnosed either. Isn't it funny how subtle these things are but we still notice. My palms have become as hard as a rock by the wrist and I can't spread my fingers. I wake up with my hands in fists but during the day I have more movement and sometimes I'm thinking it's all in my head. My Dr. told me tho that the tightening starts at the finger tips and works it's way up the hand. This has got me thinking that it's not scleroderma but perhaps Duputryen's which runs in my family. That is a tightening of the fascia under the skin. I do have most of the other symptoms of scleroderma tho but my ANA is always in the pattern for lupus. Who knows, I guess time will tell. I've found it's best to just enjoy each day and not to worry about what may never happen. Take care, Hugs, Piper
  10. Piper

    Getting To Know You - Archives

    Hi All, I've been a member for a few years and I still don't have a definite diagnosis but I continue to have new symptoms all the time. I was a stay at home mom and girl guide leader for years and loved it. When it was time to resume my career, I was too ill. I have 2 children, now both in college and I care for my mother who is legally blind. Not having a diagnosis other than fibro has been rough. Now it looks like my illness could be called UCTD. I don't know where it will go from here but I mostly have symptoms of scleroderma. Thank goodness I had a G.P who believed there was something wrong with me. Take care, Hugs, Piper
  11. Piper

    For Raynaud's Sufferers

    Hi, The first time I noticed my raynauds was when I would hang my wet laundry outside in the winter. I don't do that anymore when it's below freezing. I also find that it happens when my core body temperature goes down as opposed to just getting my hands cold. Hugs, Pipes
  12. Piper

    Lidocaine Patch

    Hi Patty, I just wanted to say that I get some relief from an OTC pain relieving creme for mild arthritis pain that you rub on the painful spots and from taking 2 tylenol arthitis capsules. The Tylenol arthritis slowly dissolves in your stomach so it works for 8 hours instead of 4.Helps at night. I've been trying not to take too many NSAIDS since tests came back that I have stage 2 kidney failure. Hope you find some relief, Hugs, Piper
  13. Piper

    Sore Hands

    Hi Louise, My hands hurt at night like yours and I sleep with a heating pad and a couple of small soft pillows that I rest my hands on. I bought some mitts online that are filled with jell that you heat in the microwave. I mostly bought them for winter and raynauds but the moist heat they produce is lovely. I find myself watching t.v with them on. If you e-mail me I'll give you the name of the company because I don't think I'm allowed to mention it here. I also have a parafin bath that I bought at a department store. It has a plastic tray across the bottom so you can't burn your hands. You can buy all kinds of scented wax for them. I have lavender now with special oils in it. I think your Dr. with the "good pain" went to school with mine. He told me that some people "just hurt" more than others and I should live with it. lol Hugs, Piper
  14. Piper


    Hi Michelle, I'm sorry you are having such pain from your back. That really is miserable. My daugher who is 19 was diagnosed with scoliosis at 12. They just followed her and didn't recommend any treatment. They also said she shouldn't be having any pain, but she does. She has found a great massage therapist and she goes weekly to her. She gives her strengthening exercises to do as well. My daughter says that it really helps her pain. Hope you find something that helps, Hugs, Piper
  15. Piper

    Is It Sclero?

    Hi Krista, I just wanted to chime in here and say that I've had symptoms like you describe for the past 5 years. I was diagnosed with fibromyalgia/cfs 3 years ago and I have new symptoms occuring all the time. I, like Heidi have given up trying to get a diagnosis ( other than fibro) and just concentrate on the symptoms being addressed. I've had a positive ana 1:160 speckled for 5 years now. I also have developed raynauds, Gerd, occasional difficulty swallowing, Ibs, hypertension, very dry eyes & mouth, swollen parotid glands, carpal tunnel, arthritis in hands and sacroiliac joints, alopecia,fatigue & terrible brain fog. I have symptoms of electricity running through my legs and lately a burning feeling. Many of these things come and go which has made me wonder about M.S as well. Lately my palms have become very hard and tight. My Dr. assures me that the S in CREST starts at the tips and works it way up the hand. Now I'm wondering if I haven't inherited duputryen's from my father. It sometimes takes a long time for the pieces of the puzzle to be fit together. Sometimes they never are. We can just treat the symptoms. I find a great deal of information & support from the members of this site with the symptoms that I share. I hope you have a positive appointment with the rheumatologist and don't forget to record all of your symptoms. Take care, Hugs, Piper