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Everything posted by gemjar

  1. Hi Mary, Thankyou for your reply :) I am currently undiagnosed and my rheumatologist does not believe I have an autoimmune disease, because my blood work all came back within normal range. He doesn't believe in fibromyalgia and got quite defensive when I specifically questioned him on scleroderma. Anyway you can read what happened in my post "update on 2nd rheumatologist appointment". My local dr did admitt that the anti-inflammatories will only work when there are flares and that it's possible for me to not be gaining any benefits after a time of use. I do find that my aches and pains vary in degree from day to day, which confuses me and makes me wonder if in fact anything is wrong. But then this last week I have been more fatigued than ever before, even having dizziness, making me feel fuzzy headed most of the time. This is new for me. Snowbird...the xrays were to show any bone deterioration, which they didn't (remember my rheumatologist first believed I had OA) but he has referred me for an MRI on my left hand. He says that because I have no tissue loss on the fingertips, still have hair on the tops of fingers and my fingers aren't permanently bent...then it's impossible for me to have sclero. (my whole fingers are swollen, but the tiightness of skin mostly affects from the middle knuckle down to nail) Anyway.... i am not going back to see him, regardless of the MRI results ! Thanks everyone for your advice, i really appreciate it :) Warm hugs, Karen
  2. Thanks everyone for your warm support and advice :D Tru and Mando....i am in Australia and like Helen, live 6-7 hrs away from a major city. Tru, what does Paxil and Methotexate do for you ? Not getting an early diagnosis is something that bothers me (if it's sclero) as from what I have read here it is essential to the progression of this disease. Helen.....i may just ask to be referred to Dr Klestov yet ! I didn't want to wait so long to see him, hense my appointment in Brisbane. I'm starting to realise that waiting can be a big part of this journey. I have to schedule an app. for an MRI of my right hand. Has anyone had this done ? Oh by the way, thought I'd share this Dr's analogy on why I wake up stiff and sore. He asked me if I'd ever owned a wind up watch (you can see where this is leading) then asked me what time of the day I wound it up, to which I replied the mornings. He then asked me to describe what winding the watch felt like...i said tight and then he said "there you go, after a period of rest one would expect to wake up feeling tight, just like the watch" !!!!! Can you believe he even said that....i was so shocked, then angry I wanted to throw something at him :blink: Oh well, one day I might laugh about it ;) Thanks again, Hugs, Karen
  3. Thanks Peanut.....i can't say for sure that he is a Sclero specialist, i was just told that being a rhuematologist he also is informed on sclero. From what he said and the way he said it, i get the impression his only experiences have been with patients whom are severly affected. I was going back through some old posts and noticed one that you had written. You said that your sclero was "inactive" for probably about 10yrs before it became active. You also mentioned that during this time your fingers were more swollen than tight. That is interesting ! I have also read on a FM website that the extremities can appear swollen, stiff and aching. Also very interesting. Hope you are doing better now....did you find your wallet ? Take care, Karen:)
  4. It didn't go well at all !! How is one supposed to cope when the dr is narrow minded and arrogant :angry: All my blood/urine tests were negative. The hand/feet xrays show do bone deterioration. This is what he had to say about my swollen/bent fingers......."they have probably been like that your whole life and you've never noticed them before", about my swollen feet in the mornings......"has anyone else seen these swollen feet", about my tight face/smile in the mornings....."if it were sclero your smile would be like that all the time and not just the mornings", about the joint pain in my fingers....."and when does this joint pain occur", about my all over muscle aches and constant fatigue....."there is no such thing as Fibromyalgia, i don't even like using that term", and finally if there were anything wrong it would show up in my blood tests. He also said if it were sclero I would not be able to flatten my hands out on a table, that my fingers would be permanently bent. He also said he wouldn't be able to pinch the skin on my fingers, to which I told him that by 5pm in the afternoon the swelling goes down and my fingers look wrinkly.(it was 5pm when I seen him) He said that wasn't possible in sclero ! He has referred me to have an MRI of my right hand and told me to ring him with the results(he is a 6hr drive away) not to bother making another appointment. I have already descided that even if the results showed anything, i will not go back to see him anyway. I do not have any loss of tissue on the finger pads, my nails look fine and I still have hair on the top of my fingers, all of which are not normal in sclero he says. What are your thoughts on what he has said and where do I go from here ? Should I get a second opinion or just let it go ? I feel that if I had been taken more seriously and given the respect that every patient is entitled, i'd be able to come away feeling confident that every base was covered. Un fortunately I don't feel that way at all. Please give me your advice...i'm more confused than ever :) Thanks, Karen
  5. Forgive me if this post appears twice, the first one seems to have disappeared into cyber space ! I'll try again..... I have been taking Mobic for just on a month and at first I could really notice the difference. Now I don't seem to feel any different than before I was taking them...the aching muscles and joints are back. The pins and needles have stopped in the arms/hands at night and I've been left with a permanent numbness in my little pinky as a result. The legs are now what give me trouble...they feel like dead weights most of the time and when I stop to sit or go to bed at night, they just ache constantly, keeping me awake. Is it possible for the anti-inflammatory medication to stop working, or has my body just become used to it ? And would the anti-inflammatories be expected to work, when I show no signs of joint damage in xrays that I've had ? I go back to the rheumatologist in 3 days for the second time and I'm afraid he will send me on my way without answers/explanation to why I have these symptoms. He will have the blood/urine test results, but I have this sinking feeling again that it's not going to show anything and I'm actually hoping it does ?! I suppose its recognition I need and I'm desperate for that at the moment. Any advice as to how I deal with the next step...this is so hard :( Karen.....(feeling lost at the moment)
  6. My fingers (not hands) are always puffy and the finger joints ache almost all of the time. When I hold my hands out in front of me the index and middle fingers on both hands are more curled than the others. At times they will turn "pruney" looking, just as you've described. My xrays showed nothing and I'm looking forward to my rheumatologist appointment next week (i am undiagnosed), he was quite sure it was oesteoartritis only !! You know whats funny........everyone asks me how my hands are and when I show them, they will bend my fingers straight and ask me if it hurts. It usually doesn't and that casts even more curiosity as to why they won't stay that way. People are funny aren't they :huh:
  7. Hi Karen, I am sorry that the sclero diagnosis has been confirmed, but at the same time happy that you finally know and can move forward from here. It must be a lot to take in at the moment :unsure: You are in my thoughts, take care. Karen
  8. Hi Helen, Owww....that sounds very painful !! Did the podiatrist deaden the toes for you ? I didn't know they did that sort of thing. When you say your nails are curling in from the sides, do you mean lifting from the sides (concave) or curling in like an ingrown toenail ? Hope your feet are feeling better soon since the cool mornings and nights have set in. Take care, Karen :)
  9. gemjar


    Thanks for that link Janey :) I assume all you girls have altered your diet somewhat !!! how are we supposed to cope without CHOCOLATE and carbonated drinks !!! I love my coke and I love my chocolate and I love them even more when they're together And I always take a cup of tea or hot chocolate with me when I go to bed. That and reading is my nightly routine ! Its not fair that we not only feel awful, but that we can't indulge either to make us feel better. Oh well...better get used to it, maybe this might help me to loose weight:) Karen
  10. Thankyou, thankyou, thankyou........it feels sooooo good when I hear others having same/similar problems (sorry that sounds aweful) The general practitioner thinks the numbness is due to nerve problems in the neck...hense the CT scan. She did mention peripheral neuropathy and also possibly anti-depressants I am taking, which she is slowly weaning me off. I will probably be a mess agin (mentally) when I get to the rheumatologist in two weeks, but the positive side to all this, is that these possible causes will have been eliminated. Susie....my fingers and feet are very swollen first thing in the morning. Sometimes the puffy fingers will go down during the day, but at other times when I'm using my hands quite heavily eg; cleaning, gardening, they will stay puffy or even become worse. It started with just my right index finger, but has progressed to all fingers on my left hand and only the index and middle fingers on my right. They are also slowly bending, although if I lay them on the table and push down I can get them flat....but that is uncomfortable after a couple of seconds. Does the skin tightening happen to everyone, or have some of you only ever had the swollen fingers that doesn't progress any further ? Thanks again ladies, your replies have helped me more than you know......hold on....i think you do know :) Hugs......Karen
  11. I started having the odd bit of reflux about 6mths ago (before this journey started) and thought it was strange since I've never had a problem before. I thought that it was just the food I was eating. But more recently I am having reflux on a daily basis and it catches me unaware, like when I bend over to pick something up off the floor, or exerting more energy and then last night it happened just as I layed down to sleep. It was so quick and unexpected that I thought I was going to be sick. I am wondering how slowly/quickly this appears in others that have this problem? And when does it become a concern? Also do particular food/drinks make it worse? This road is certainly a long and confusing one, when you know something is not right but there are roadblocks at every turn. I appreciate all you wonderful people taking the time to answer these basic questions I have. thanks again :) Karen
  12. There is no sign at all of any arthritis in my hands and feet. I will go back to the rheumatologist in 2wks. It will be interesting, he thought I had OA. This probably sounds like a stupid question, but would we be expecting to see anything in the xrays if it is sclero? And why are my joints so sore in my fingers? In the pictures you can tell my fingers are bent, but the bones look great! Also my general practitioner wants a CT scan of my neck, because I now have numbness in my small pinky finger , hand and arm on my left side......started from the pins/needles I get during the night and 2 really bad nights when my whole arm was paralysed, but burning with pain (if that makes sense) I have been told it's not carpal tunnel. I have been taking anti-inflammatories again and they seem to be helping. My feet are more swollen in the mornings and when I put them on the floor, they feel rounded underneath like pillows, but at the same time my ankles and backs of my lower calf feel very stiff and sore until I get moving. Does any of this ring a bell? I will be telling my rheumatologist that all these thing seem to be slowly getting worse. I told my hubby that the xrays are all clear and he said "thats great, but whats wrong with your fingers then". My mother thinks it is the tendons from 20yrs of hairdressing, but how does the swelling fit in to it all? I remember someone writing that their fingers looked like prunes when the swelling goes down and I can agree there. Mine look like they've been in water by the end of the day and sometimes even the airconditioning has the same effect. thanks for listenning, Karen :)
  13. Thank you for your replies Peggy and Janey......i was at the doctor again this week. The pins and needles were so severe in my left arm during the night, that my whole arm felt like it was on fire. This was 3 nights ago and it has left me with numbness in that arm. My dr was away and the one I seen said something about nerve compression and used the word 'neuropathy'. He also mentioned that in my file, 'fibromyalgia' was referred to. I am going back to see my doctor in 2 days, so hopefully I will get some more answers then. At the moment I feel like cutting off my left arm, it just doesn't feel like my own! Oh... and he doesn't think it's carpal tunnel as my tingling/numbness is in the 2 small fingers, apparently CT is in the thumb and 2 main fingers (different nerves) Thank you for shedding a new light on my rheumatologist, i hadn't really thought of him that way, but I can see what you mean :) Eileen....thanks for responding. I don't have to tell you how hard life with an autistic child is...you know! This is off topic, but I just want to say that with the right support, education and an abundance of faith, miracles do happen! I hope you get some answers too for your symptoms. Hi Le-Ann...what an encouraging response you've given me, so uplifting and just what I need:) Your advice on relaxation before the appointment is so spot on. I was not in the right frame of mind to begin with....i'd had issues with my 12yr old that week that had me more stressed than usual and had forgotton my meds more than once that week including the day we travelled (7hrs drive) then I napped on and off in the waiting room for over an hour until my turn. As a result I had quite a 'brain fog' when I went in. Not a great start, but on the positive he got to see the 'real' me! I will take your advice next time and try to be better prepared. Thanks again everyone, sending you warm hugs. Karen
  14. I have been wanting to update you, but have been too overwhelmed to know where to start. Well I had my first appointment with the Rhuematologist and it didn't go as well as I'd hoped. In actual fact it felt like I was having a councelling session!! I feel like I need to share some personal things for you to get a clear picture on how this happened. So here goes........ I am 38yrs old and have 2 children. My 12yr old daughter has Asperger Syndrome(autism spectrum disorder)and ad/hd. My 6yr old son has Autism. I have Bipolar Disorder which is controlled through medications and councelling. 13yrs ago we lost our first son when I was 6 1/2 mths pregnant...also at the same time as my hubby was having major surgery for a malignant melanoma. While I accept the hurdles we've had to face, i won't deny life with 2 special needs children, while trying to look after my own mental health, is quite stressful and exhausting. What I hate though is that as soon as the rheumatologist started to find out these things(and I understand they have to get a picture of our lives) but I felt like it became a black cloud hanging over me, hindering the true reason why I was there. He asked me many questions and sme he wanted specific answers to, which I was unable to give him eg: which part of my foot is sore in the morning and which fingers had pins and needles in them during the night. I gave him my list which he looked at breifly at the end of my appointment. He believes I have oesteoarthritis and not RA which is what I was referred for. He said that my fingers were flexible when he bent them during the examination. I asked if the swelling was a symptom of OA which he didn't answer. He said that I was under extreme stress and that stress works it's way out in the body in many ways. I asked him if he thought this was all in my head and he said no he believed I felt this pain, but once again the "stress" word was used. I ended up sitting there crying like a baby and left without asking him the many things I wanted to. He is sending me for xrays of the hands and feet, as well as blood tests. I go back to see him in April and this time I want to be more prepared than before. So I have a few questions again. Do I just come straight out and ask him about scleroderma, or will this get his back up? Also even though my fingers do not straighten on their own, i can make then straight if I lay them on a table or if I use my other hand to bend them. Is this something you couldn't do with sclero? my arms and fingers go numb and have pins/needles in them at night which constantly wakes me up, no matter what position I lay. The pinky and ring fingers are the ones which I notice the p&n in most (even during the day) My fingers are mostly swollen from the middle knuckle down to the nail, and by night are all wrinked unless I have been cleaning etc during the day they are really bad. I didn't get a chance to tell him how my face is tight in the morning until I get the muscles working, my smile is tight and comletely different. Also in this last week my muscles are aching much more, that it takes so much energy to lift my arms to fold clothes and to get out of a chair if I've been sitting a while. I'm sure I could keep going, but think I have rambled on enough. I would really appreciate some thoughts and advice on how to go about this next appointment if all tests/xrays show nothing. Also your thought on the symptoms I have mentioned...do they ring a bell? Look forward to your replies, i'm feeling at quite a loss at the moment :( Warmly, Karen
  15. Thanks everyone for your replies and support. My appointment is a 6hr drive away, so therefor will be gone a couple of days. I will post again when I get back and hopefully have some news (good or not) to tell. I appreciate your warmth and sincerity. Hugs, Karen
  16. Until I see the rheumatologist for the first time !!! I am very nervous and scared that he will send me away without any answers. My fingers aren't as bad at the moment and I am hoping they will puff up big time by Thursday, just so I know that there is something visable to show him. (crazy hey) I have a list of symptoms that I'll give him, even the trivial stuff, so he can descide whats relevant and what's not. A question for you all ! Is having irregular bowel movements a symtom at all ? This has been happenning for the last 4-5mths and when I try to go, often the pain is so accute that I end up vommitting ! Is this something I should put on my list, what do you think ? Hope to have some answers soon, Warmly, Karen :)
  17. I'm wondering if it's possible for someone with Scleroderma, to have the puffy/swollen fingers and then within one day they are gone and the fingers look completely normal. This has happened to me today, for the first time in months, my fingers are straight, not sore and the swelling is gone. Actually they look like old hands because of all the wrinkles, which I am not used to seeing :blink: While I am thrilled to have "normal" fingers again, it worries me that they will stay this way when I see the rhuematologist for the first time on the 28th Feb. Am I crazy for wanting my hands/fingers to look the way they did before so he can view them at their worst ? The way I look now no-one would believe how bad they were. Also strange because I have just finished some anti-inflamatories which I think didn't make a difference. Now that im off them the swelling goes ! How normal is this, is this common ? Thanks in advance:) Karen Undiagnosed ATM
  18. Hi, Something Sheryl said just rang a bell with me. I have the broken blood vessel type around my nose and high on my cheekbones. They have been there a while and some days are redder/stand out more than others. I can usually cover them with foundation though. The "red dot" tpye that Sheryl spoke of I'm curious about. I have had a raised red dot (looks like if I pricked it it would bleed) on my stomach. I have never really paid much attention to it and it doesn't hurt or bother me. I wonder if this is a talengiectasia ? Are there different types ? When I see the rheumatologist, will he know if these are talengiectasia ? Thanks, Karen Undiagnosed ATM
  19. Terri...my thumb felt the way you described, but is feeling better now since the antibiotics. Karen L.....the pus is gone but there is still a dark spot under the nail and the nail is still separated from the finger in that spot. I will definitely be keeping an eye on it. Thanks again....Karen :)
  20. Well my rings are off :( My mother insisted I take them off after the problem with my thumb and the Dr commenting on my swollen fingers (which he has prescribed more anti-inflammatories for) I couldn't get them off with my sore thumb, so mum lathered up my finger and with much difficulty got them off. I don't think she realised how bad my fingers were till then. My ring finger looks and feels strange....i really miss my rings ! I am going to resize them I think, but I'll wait until I know more from the Rhuematologist. Many thanks for your replies and personal stories :) Warmly, Karen
  21. I went to the Dr and he had to put a needle into it from under the nail. A lot of pus came out and I am now on antibiotics. He said something about poor circulation. I don't think he knew either. It was probably just something that got under the nail. I just worried because it has never happened before and there are lots of new things happenning now, i thought this might be related. It was very sore. Do ulcers have pus ? Thanks for replying, Karen
  22. Hi Pam, So sorry to hear your family are moving away :( It is heartbreaking I know ! You have made me realise how my own mother must have felt when we descided to move from NSW to QLD (not as far as your son) Cutting those apron strings at 34 was very much needed and not easy for me either, but after the initial feeling of guilt and abandonment (on my part) that lasted about a week, it turned into my first real life adventure. My mother and I have always been close and we missed eachother terribly, so we both invested in webcams where we could set up a time and connect that way. We loved it, the children loved it, it truely was the next best thing to being there. Our relationship has developed much stronger than before and when we seen eachother it would be as if we were never apart. That to me is a true sign of a close relationship ! When we visited once a year, it would be for a few weeks and it was always more precious than before. Now my mother and her husband have moved up here too, so we are close again. I am very Blessed ! I hope this gives you some encouagement. The relationships you have built with your family are solid and therefor that bond will never be broken, no matter how far the miles between you. {{{{Big hugs for you}}}} Warmly, Karen
  23. Last night I noticed my right thumb was feeling tender to touch, around the nail. I thought the skin had come away from underneath the nail (you know, quite normal at times). I cut and cleaned all my nails short and I couldn't see a thing there, although it felt sore. This morning I woke early due to a swollen, throbbing and very painful thumb. When I look at it I can see a round, yellow/purple coloured sore under the nail (right where it joins the fingertip). Also the skin on the very tip of the thumb and down to the first knuckle is so tight it feels almost numb (except for the pain if that makes sense) I have read through the links here on ulcers, but can't find any simple info on how they start or if what I'm experiencing is the start of one. Of all my swollen/bent fingers, the thumbs were the only ones that felt and looked normal...until now ! I can't even use my thumb to stir a cuppa or pull up my pants its so painful. I would love to hear from anyone whos had these and can describle how they start. Does what I'm experiencing sound like an ulcer and is it possible to develop these basically overnight. The skin was not tight or sore until now. I hope that I have just gotten something under there with knowing it at the time. I am so grateful I can come to this forum and ask my questions and get support from so many wonderful people. Thankyou ! Warmly, Karen
  24. I was just wondering how many of you have had to remove your wedding rings due to swelling in the fingers ? I have never been a ring person, but I never take off my engagement/wedding bands for anything. They have been very tight for some time and I managed to get them off the other day. My finger looked so deformed without them and I knew that if I didn't get them back on staight away, i probably wouldn't at all. So I painfully forced them back on and now the thought of having to remove them saddens me. What are the chances of getting them back on again if I take them off now and if I leave them on, will it matter ? Probably sounds a little crazy, but the little things sometimes do matter......... Warmly, Karen
  25. Thanks everyone for your replies :) Janey, the drug is Mobic 7.5mg.....i have taken one tablet for the first 4 days and then tried 2 today as I didn't think it was still working. My general practitioner said I could do this to trial it. So far I haven't had any side effects, but I am wondering if it is working or if I have gotten used to it already after a such a short time. Also I am still really tired all the time even thought the muscles aren't as sore. I had hoped that the tiredness would go as well, or does the tiredness stay. I am finding that I need to sleep for a couple of hours in the afternoon, but thats often difficult with young children to care for. Oh well, i have another 3 days left of the anti-inflammatories and then it is wait and see what the rheumatologist says. Celia, nice to see another Ausie here :) Warmly, Karen
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