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georgette

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Everything posted by georgette

  1. Hi Lucy, What you described is exactly what my physical therapist did to my hands but they are still swollen and very hard to use and its day four. I rang him today but he was not in, so I rang my doctor and told him and he said that it sounded as though the tendons have become inflamed and to splint the hand to rest it and take some naprosen, and if it was no better then I had to go see the doctor. So at the moment it is a waiting game to see how it all turns out by the end of the week . Hugs, georgette
  2. Thank you everyone for sharing your experiences with me. Lizzie, no, the physical therapist had never heard of scleroderma, but did say that after seeing my hands he was going to research it more for future patients. He did say to me before he stretched my fingers that it would hurt so I knew all that but it is the after effects that have me worried. It's 2 days now since the treatment and my fingers are still very swollen and I feel very bruised right up to my elbow. And now since I awakened this morning I have tingling in my fingers. I'm wondering if the swelling in the wrist area is putting pressure on the nerves to the fingers. I think he has actually inflamed the tendons at least that's how it feels. I can't rest them either as I have near no use of the left hand so I have no choice but to use this right hand so resting it completely is not possible but I will try to use it as least as possible. Thanks again for sharing your experiences. I will wait until Monday and ring to tell him what is going on. Thank you. Hugs, georgette
  3. Hi everyone, I wanted to ask you all if my response to my physiotherapy session is normal. I have very little use of my left hand and my right hand /fingers are curling so bad I can neither straighten my fingers or make a fist so I went to a physiotherapist to try save my right hand from any more curling. He stretched my tendons, he pulled and pulled on my fingers. The pain was quite bad. He worked on the tendons right up to my elbow. Now today, the day after, my whole right arm/hand/fingers are wretched with pain and my fingers are so swollen like little fat sausages. They are so fat and throbbing and hot, I am having trouble moving them. Is this normal? Will this swelling go down? I don't know what to think here, as my fingers and fist are definitely worse than before I had this treatment. Should I continue with this treatment or is swelling and pain a normal response to tendon stretching? I look forward to reading about anyone else's experience with tendon stretching. Hugs, georgette
  4. Yes, Kamlesh, my eye involvement was the first port of call for scleroderma. It started with intermittent blurred vision. This was due to dry eye. Then from there it was all downhill: pain, infection, blurred vision. It is controlled with anti-inflammatory creams and cortisone drops, but it is always there to varying degrees. Some days more tolerable than others. Try those eye drops (fake tears); I can't recall the name. See if that can give you some comfort and maybe if that dry eye symptom is settled then the rest may not follow. Good luck. Hugs, georgette
  5. oh wow I so "tips me hat" to all you sclero effected mothers with young kiddies to chase around after , I just dont know how you do it ! sclero is a nasty syndrome to have but if I had to get it then I feel glad that I got it in my fifties ,after I had raised up my family. My heart goes out to all you young ones and particulary you young mums ............. what you all posted has set me to thinking that I am going to set up a day ,perhaps next saturday where I spend the whole day in bed resting and just watching TV ,and I am going to take note as to how different the arm leg pain gets ......... peggy did your doctor tell you what is actually happening to those muscles ? are they tightening like our skin or inflamed or ......... hugs georgette
  6. well thankyou all for your replies , this sclero is a real gem to live and sleep with eh ? I must say thou it still puzzels me as to why it would get worse when you are actually resting those inflamed muscles , during the day time my muscle pain is about a four or five out of ten but at night they can get to a eight or nine out of ten ...... the fatigue from sclero actually works in my favor as I sleep right thru all the pain never a deep sleep as I am too conscious of the pain but sleep non the less , does anyone know if this muscle pain gets better the more you walk thru th day or the more you rest thru the day .......hugs georgette
  7. Hi everyone, I was just wondering if others have a similar symptom. My arms and legs are stiff and sore all the time and it can make simple tasks difficult, but when I am sleeping they are at their worst. I am aware of the pain through my sleeping time even when I dream the pain factor is in my dreams too. I cannot just turn over in bed as my arms and legs hurt so much I have to half wake up and plan how to turn my body over, ya know what I mean, which limb hurts the least type of thing. And by the time I wake in the morning I cannot just get out of bed I have to slowly start to move each arm and leg through this awful pain until I can manage to sit up. Once I am eventually up and I start moving again the pain goes back to its normal stiffness and soreness which is manageable not excruciating like what I get when my body is at rest. Its so puzzling as I would have thought the opposite would happen if you are resting the pain should subside, but that is not my experience. Do others get this too? Hugs, georgette
  8. G'day ced , I don't know who you spoke to but that discount is from November through to April, that is 6 months, that is so we can run our air conditioners through spring and summer months. You might need to ring back and check that out . Hugs, georgette
  9. Hi , yeah Sam, its tough if you are an 'in the middle' income earner bracket, too much to qualify but not enough to be classified as rich you just struggle along. Jensue , just a thought here but you may have this type of thing in the UK , the reason I say this is because the government here does not advertise these discounts at all it is only by word of mouth that this news gets around, it might pay you to do a web search on UK concession discounts, or ring your electricity supplier and ask them directly .....worth a phone call , and when I rang my electricity company, yeah it was right , done ! 17.5% discount ....good luck Hugs, georgette
  10. Hi everyone, This is information I would like to share with other Aussies, and for other members perhaps they can see if their governments have a similar thing. In Australia, if you are on a concession /pension card and you have scleroderma you qualify for a 17.5% discount on your electricity bill, if you have any medical condition that sees you unable to regulate your own body temperature or breathing difficulties you automatically qualify for this concession. This discount is only for 6 months of the year from November through April (6 months). You can send me a PM and I will give you the 800 number to call and you ask for a 'medical cooling concession' form. You then get your doctor to write in scleroderma and you are done. 17.5% is worth chasing up. Hope this info helps towards your summer comfort and family budget. Hugs, georgette
  11. hi , yep my eyes were the first place that was a sign of scleroderma , my first symptom was the eyes just ached ,followed by infections and pain with deminished vision, went to an eye specialest and he was the one who told me it was an autoimmune problem that was the begining of my sclero journey , now 4 years down the road my optic nerves are shrinking , some days my eyes are so bad with pain I just have to keep them closed as I can't tolerate the light nor air on the eye balls , my right eye is worse than the left ,reading is real hard as you have to move your eyes from right to left to read a sentance and any eye movement causes pain ,it is even harder when the print is small , so yeh sclero does effect the eyes unfortunatly , hugs georgette
  12. oh wow thanks shelley it works , now I can read the posts without so much eye strain yay !!! hugs georgette
  13. Hi everyone, Shelley did I read right ,what you said "sometimes symptoms can even clear up and go away "even without treatment!!!!!! I thought once you had sclero it was a life sentence ,I thought you could go into remission but sclero was always lurking in the corner waiting to re surface ....... wow that would be so fabulous if that is true ...... it could be that I have read some posts wrongly in the past as I have to admit I can't always read the posts properly as the print is so so so small and unfortunately one of the first places sclero showed itself was in my eyes so I have to find a solution to this problem other wise I'll have you poor folk repeating your selves over and over to me, my apologies if you have to repeat your selves to me. I have tried to enlarge the print but have not been successful, I can only ever stay on this site for a short time due to the strain on my eyes trying to read this small print, they start to pulsate with pain within 5 minutes of reading posts so I try to read fast and that's probably where I am getting the wrong ideas ugh!!!! So frustrating as this site is so informative ......................hugs georgette
  14. hi , I can't help you with your lung question ,but I can tell you that when I'm in a flare up I get those little white bumps on my torso and legs at first I thought they were spider bites but there were no puncture wounds they were very itchy too they subside after 10 minutes , does anyone else get these whilte itchy bumps ? or does any one know what they are ? hugs georgette
  15. oh anne , you poor girl , the pain with each breath must be awful , its good that your trying to keep up with your sense of humor but to watch a comedy could be disasterous ,imagine how much it will hurt if it makes you laugh !!!! hope you get better real soon hugs georgette
  16. hi everyone, so razz does that mean that if you even go into remission will your hands stay that way? my fingers are fat and have a curl in em I can't make a fist but nor can I straighten em. I guess I'd like to know how many sclero hands get fully distorted like razz's as opposed to how many hands stay where mine are at. I can't even begin to think how tuff life must be for you with your sclerodactyly. hugs georgette
  17. Evening everyone. I just wanted to thank you all for your very informative input. You've all given me a little hope that remission is definitely something we can put on our 'wish list'........ Once again, thank you all. Hugs, georgette
  18. thanks everyone for your input , so its final then that there is no cure but it is not hopeless it does abate at times go dormant for a time but will always be there , well I guess that is better news than no cure ,no remission and no hope eh ? its sure no fun haveing sclero , I saw the video razz made it was so good but I was surprised by her hands ,once ya hands get that bad can they come back to normal if ' n go into remission ? hugs georgette
  19. Hi everyone, I have read on the internet that there is no cure for scleroderma, is that true or misinformation? Also what about remission, can one go into remission and is there any stories around about how long remission is and have some people stay in remission? I would appreciate any feedback. Hugs, georgette
  20. I learned something about fatigue just recently that made me realise that when fatigue hits ya better off just surrendering to it even if it is a lay down for just 10 minutes , what I learned was the difference between normal healthy fatigue and medically induced fatigue ......I remember when I was healthy before sclero and I would get tired so tired that you wonder how you can even get out of the chair to go to bed ,and just as you go to get up you remembrer you forgot to make the lunches for the kids next day , you push your self out to the kitchen and start making those lunches , but at some point you tend to get a "second wind" you suddenly have more energy where ya can do even more than just do the lunches , this is healthy tired ,you do get a second re charge , but with medically induced fatigue once your fatigued there is no 'second wind' no second extra charge , when your on 'empty' thats it , the only way to refill your tank is to lay the body down so it can recharge itself ...... hope this makes sense , but this has been my understanding and my experience .....when I get the fatigue , I just cannot push thru it but soon as I lay my body flat to rest it it seems like the muscles etc can get a recharge , so I give in to this and it make for a much better day in the long run ....... hugs georgette
  21. hi lottokids , thats a good example of an unplugged doctor verses a doctor that is doing his job !!!!! sweet and other members who have said sack em and move on to the next doctor until you find a good doctor , the big problem there is ..... time wasted ,money wasted and the hardest thing, energy to keep starting over again ,and the fact that there are not too many sclero specialest around makes it even harder , so with all this into consideration sometimes its easier to stay with the devil you know than the devil you dont know !!!! one of my biggest hassles is fatigue so I dont always have that 'fight' in me ,its made extra hard too as I can no longer drive my car so options to sack and change doctors sounds like a great idea but as great as it is it presents with its own problems , its a sad thing that we have to keep doing the changing ,it would be so much easier if doctors did the changing ,maybe they need to go back to do a manditory class once a year to teach them how to relate to people ,now that would help eh ? any how this aint going to happen so I guess we just need to bite the bullet and just keep soldiering on in this battle field of medico's ugh hugs georgette
  22. hi everyone , yep I sure like that idea of a refund !!! lol wouldnt their attitudes change then , glad I'm not the only one that finds doctors ugly people , so sorry I laid it on thick but I was just so angered when I read poor ceds post and as I said my friends who also have sclero are haveing such a rough trot with doctors and their attitudes ,I would crawl under a rock and stay there if I knew I was that cold and unplugged from people as these doctors are ,so sad , well I've had my beef , feel better too lol hope ya all have a good pain free week end hugs georgette
  23. I have an appointment in november to see a sclero specialest ,I am soooo not wanting to go , I have just had enough , yet I know if I dont go I am only hurting myself , but I just am so so over the rude arrogence of doctors ,its their bad bed side manner that has worn me down ...I was just reading ceds post about her pain and the doctors response of 'so long as there is no numbness etc' thats what prompted me to write in , it seems to me that if there is no visible signs or a test that tells the doctor that your pain is real then it is all in your head !!! to me that is disgraceful , for me I guess you could say I am one of the lucky ones I have both visible signs and test results back up what I say but I have friends that are not so lucky and are treated so so badly , doctors are so unplugged from their patients nowdays ,its doesn't seem to be that they are there to help others its more that their there to help them selves to our money $$$$ then they shove them out the door "next please" .....doctors are a breed of their own ,and I'm so proud to say I could never treat another human being the way they treat some people ........ just venting here , hugs georgette
  24. thankyou you all for your encouraging kind responses , I didn't know you had to do the skin stretching on the face and body so Id bettr get to and do some my torso skin is getting so tight that if I lean forward in the chair it feels like the skin is tearing and both my arms/hands skin is so tight I can't rotate the wrist or straighten my arms , so with these exercises do I do them until it starts to feel like the skin is tearing or do I stop before that point ? I might start by doing them in the shower as suggested by judy ,wow thanks so much for your input , I dont feel quite so alone ,I just can't get any anwsers or action from the medical field yet when you turn to the internet the doctors get so angry ,they tell you to STAY OFF the internet but if it werent for the net , I wouldnt have a clue what scleroderma was ,as the doctors tell you zilch ..... I am so so over doctors grrrrrr ....thanks again hugs georgette
  25. hi , amanda , I so get what your saying about "becoming a difficult ' patient , but unfortunatly here there are so few specialests for the amount of patients that if you become 'difficult' they just tell you to go elsewhere , so they hold the power ya have to put up with them, I suspected for a long time that this rhumitoligist was stalling ,he was avoiding my questions ,and just always doing tests ,which is fine BUT after each test he would say come back in 6 weeks !!!! thats where all the time has gone mean while more and more symptoms are surfacing ,and I just feel so so unwell ,if I asked my local doctor questions about scleroderma his reply was always ask your specialest dear , but the specialest was ducking and weaving so much I couldn't get anything out of him so I have felt very alone over this past year ,the only help I got was reading stuff from this forum , so I am so glad someone took the time and effort to set this site up other wise I would be so 'in the dark' thank you all hugs georgie
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