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Lucy H

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About Lucy H

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    new england

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  1. Hi Miocean, Yes, I too have pain in my thighs. It is a deep ache that feel like it is in the muscle. It feels better when I move around and walk but as soon as I sit again the deep ache returns. Weird!! I was tested for polymiosytis but my blood was negative. Wish I could help. Lucy
  2. Hi. I was wondering if anyone out there was experiencing a similar situation. I was diagnosed with CREST but my symptoms are not "typical". Yes, I know that there is no typical but none the less I am still uneasy. The only thickened skin that I have is on the backs of my thighs... red, thick and ridgy. My thighs always have a deep ache (the worst thing to deal with) and my fingers feel swollen. I get Raynaud's constantly and have a few calcinosis on my fingers. No esophagus issues, no facial skin abnormalities, no tapered fingers. I have a history of scleroderma in my family and I am certainly sure that my diagnosis is correct (after 3 opinions). Everything I research says that skin involvement usually progresses from hands/feet to lower limbs with limited scleroderma. Mine is on my thighs in large patches with no other skin issues. I am questioning limited vs. diffuse. I will consult my doctor but sometimes it is informative to hear the experiences of others. Anyone out there like me? Lucy
  3. Hi Sarasmile, I have been advised to go for the same test because of pain (kind of like muscle burn) in my thighs. I have been diagnosed with CREST & myositis test came out neg. so they want to know why I am having such pain & trouble climbing stairs (I'm 49). I heard that the test was painful so I started to inquire about benefits of knowledge aquired vs.pain of having it. I was told it would just give them a good idea of where I was. I can tell where I am based upon how I feel. Did having it help them chart a course of treatment for you that they wouldn't have? Did they put you on meds? I am so reluctant to go on any meds other than the nifedipine for raynauds & vit D. Prednisone panics me. I am so sorry that you had to go through that test. I am really not enthralled with the prospect of having it myself. I do wonder if it is completely necessary. Now that you have done it what do you think? Thinking of you & hoping you feel better, Lucy
  4. Just want to thank all of you who responded to my post. Finally got my diagnosis- limited scleroderma, severe vitamin D deficiency which may be adding to muscle pain. Anyway, I actually do feel better now that I know what I am dealing with. I can now do my research and partner with my doctor to see what may be beneficial in terms of treating current symptoms and future treatments if needed. I believe that in an effort to minimize fear and uncertainty many doctors wait too long to actually verbalize a diagnosis to patients. It is true that these rheumatologic diseases are difficult to pinpoint but many times the symptoms are clearly indicative of a specific condition. I also believe that most patients would appreciate candor from their physicians that these diseases have blurry lines and are difficult to definitively label with a sharing of what the doctor suspects the ultimate diagnosis will be. Patients are similar to students walking into an exam, if you know the subject matter that you will be tested on, the fear of the unknown is allayed and you can concentrate on studying. If we have a diagnosis or a strongly suspected "label", we can stop wondering what our symptoms might be, we can cease searching the internet for answers that may scare us needlessly and we may actually be able to spend our time and energy aquiring helpful information and support. This forum is an example of that. Thanks, Lucy
  5. Hi Sasha. The response that you received that said check your toothpaste is right on the mark. I had the exact same issue with my lips a few years ago (didn't know that I had sclero at the time). Anyway, after months of no improvement after chapsticks, new lipsticks, vitamin E, etc. someone advised me to change toothpaste. My lips cleared up in one week. I also used to get alot of canker sores & since switching I get them so infrequently. Good luck. Hope it works for you, Lucy
  6. Hi. I also have this discoloration on my thighs & back of my knees. My rheumotologist has indicated that it is related to the circulatory issues associated with Raynauds & he put me on a calcium channel blocker. It has not really helped the discoloration and my concerns are mostly cosmetic. I was not aware of any other dangers associated with livedo reticularis. Are there other issues aside from the visual concerns? I hate to sound vain, but I am truly hoping that it will fade. I am self concious to wear a bathing suit or skirt in the summer. Has anyone had it go away or get less noticable with time, change of temp or meds? Since my doctor didn't seem concerned I have not been too worried about it aside from being upset that it is unsightly.
  7. I really want to thank all of you who have responded to my post. You have provided some great info that I will definetely explore. I can't express how helpful it is to hear from people who "get it". I feel for those of you who clearly are suffering much more so than I am, & I truly appreciate the support & suggestions. Lucy
  8. I am so frustrated and upset that I actually was insane enough to hope for a positive result on my mixed connective tissue blood test (check for inflammation). That would have at least told me what this weakness and pain is in my arms and legs and how to deal with it. My tests came out negative. I know logically that I should be thrilled. This is just impossible to deal with. I am so miserable. I have the CR of CREST so my rheumotologist says that I do have scleroderma. I have an ANA of 1:5120, pretty severe secondary Raynauds- mottled areas on my legs, white fingers/toes, and calcinosis on my fingers. My biggest problem that I really need help with is a severe weakness and ache in my thighs and upper arms. It feels like my muscle stamina is gone. It comes and goes in severity but an ache is always there. Feels like I exercised to the brink and have that "burn" that you get when you just can't get up. I haven't exercised. I can't blow dry my hair, carry a grocery bag, walk for any normal distance, etc. What do I do?!! My doctor says that this is not associated with CREST. Do any of you have this too? Now I am supposed to go to a neurologist to check the nerves in my legs since the blood work was negative. That makes no sense to me? Arms and legs with nerve issues? Timed with increased severity of Raynauds and circulatory issues coincidentally? Does anyone have this with their scleroderma like me? I can't believe I am upset to know that it's not myositis. Am I nuts?
  9. Hi Sara. I know what you mean about looking at pictures and seeing awful looking things. It seems as though they are all extremes of whatever the condition is. To answer your question, I also have 1 very small whitish hard bump on a finger that just arrived about 3 weeks ago. It has not changed at all. Just hard and white. I believe it is a calinosis but am not 100% sure. It is not like anything else I have ever seen- not a blister, not a callous which makes me strongly believe it is actually a calinosis. I also have mild callous like skin forming around some of my nails, kind of like cuticles gone wild. Not obvious to anyone else but I can tell. Hope this helps.
  10. Thanks everyone who answered my post. It does help so much to hear from others. I live in New England and it is cold which definetely aggravates my Raynaud's. I was unaware that it would exacerbate the weakness in my muscles until Stacey mentioned it. That actually makes me feel relieved because it is a more palatable explaination vs. the notion that my disease may be progressing. Thanks. Does anyone have the pinkish blotches that I mentioned? I will eventually ask my doctor, but am curious if anyone out there knows what that is? Lucy
  11. Hi Barefut, Nothing to say except I am so sorry that you are miserable. What you are going through is a major bummer and you can only do what you can do. You have had a life so far of doing stuff and I bet your family knows that you as the true you. It's natural that you feel so bad about complaining or not being as productive as you want. Your family knows you, cares and feels bad that you are suffering. They probably feel unproductive because they can't take away your pain. Hang in there and know that you are not alone. Hope it all gets better very soon. Thinking of you and wishing you well. Lucy
  12. Hi Piperpetpete. I am also going on my 3rd rheumatologist. I have switched because as symptoms are progressing I am now going to a large center. Sounds like you are also.They all have confirmed that I probably have CREST, and probably other stuff, etc. Somehow I am looking for a definitive answer. It sounds like you are struggling with the same kind of thing. My ANA is high but other blood is ok. That and the centromere pattern in addition to symptoms is the basis of their suspicions. I'm not sure why it will help to be definitively labelled-somehow it just does. Hopefully you will find all of your answers at the specialist. You are right to keep on them if you don't get that referral. I think so often as helpful as they try to be, some doctors see such extreme stuff that unless you are on your last legs (especially if you look healthy)they are reluctant to really look closely at symptoms and diagnose. It sounds like your bloodwork was fine so does that mean your symptoms are nothing? I am just a person who prefers black and white answers but this autoimmune stuff is hard to define.I do think it helps to post and see what others have who are experiencing the same symptoms. If nothing else, it adds to your education to ask better questions or rule out stuff. Good luck with everything. I am out there in the same boat.
  13. Hi. This posting thing feels a little strange, like I'm invading your personal space with my problems, but after reading so many postings I can see how it does help for people to connect with others who are experiencing the same stuff. I am not sure of what I am searching for. I guess just hearing from someone who is experiencing similar things would be a comfort. I have been sick for about a year but in the last 2 months my symptoms have really progressed. I am seeing a new rheumatologist at a major clinic in February. My old doctor said lets wait and hope you don't progress. I was told that I probably have CREST and I believe I have early polymyositis. I'll know for sure soon enough. My ANA is very high but other blood is okay. Anyway, I wanted to know if any of you are experiencing what I am. Sometimes I think I'm looney. My upper arms can't even hold something as light as a phone and the next day I can carry grocery bags. Then it switches to thigh weakness. Some nights stairs are a killer, other times I'm fine. My Raynaud's is pretty bad now (even feet). I have what I believe to be a calcinosis on my finger (small hard white bump) and I have a strange pinkish blotch on each thigh. What is that? Do any of you have the same kind of stuff going on? What do you have, how are you doing and how long has this been going on? I am not a kid, I'm 49, but I have to say that I think of myself as young. I feel so terrible when I read about some of you in your 20s & 30s being ill. I know that in the scheme of things I am very lucky and this certainly isn't a misery likes company kind of thing. I am not miserable, just looking for someone who is going through the same kind of stuff.
  14. I just read my last post from about 10 months ago. Reading it is a bit scary since it is clear that symptoms are progressing. Some days I am convinced that I am really sick, other days I just try to ignore it all. Try is the operative word. Maybe one of you who have gone through this too can help shed some light. Okay, here goes, I am 49. This all started a year ago and has slowly been worsening. My mother's twin had mixed connective tissue disease, so the genetic factor is there. My blood shows an ANA of 1:over 5000. All other blood work is normal. I have Raynaud's in hands and now feet; muscles in thighs and upper arms are really weak-no stamina. After I rest a few minutes I am okay but still strength stamina is very low. Thighs and sometimes fingers/toes ache- nothing else, when I get into bed in evening. Fingers swell all of the time (grew from a ring size 5 to 7). Now I have noticed a pinkish blotchy area on the front and back of my thighs(not hard or stiff- just clearly discolored pinky/purple). Lastly, a very small stark white round hard bump next to the nail on one of my fingers. My doctor says no to scleroderma, no lupus, no myositis. He said that it's a wait and see. That's frustrating. I don't want to medicate, I guess I just want a label so that I can know what I have and maybe then it will be easier to move on.
  15. Hi Sam. I am amazed! Yes, I know exactly what you mean by electrical pulses. Actually, this sounds nuts, but I thought that there may be something with the overhead power lines or something. I recently moved so I figured it was something that I was just sensitive to in this house. I didn't even mention it to my husband because I think it sounds so crazy. I really only notice when I am still- like lying in bed. It feels like I am picking up some sort of current that feels like low level electricity going through my body. It doesn't hurt- just weird. It comes & goes. Don't know what else to say. If you get any info about what it is- I'd love to know. Lucy H.
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