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About heddy

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    Bronze Member

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  • Location
    Victoria Australia
  1. I love, chocolate, dark light and everthing in between. My body though is no longer letting me eat it. No worsening of symptoms, I just dont feel like eating it anymore, all chocolate that is except white chocolate!!!! When I wake up at night with bile in my throat from reflux, I reach for the white chocolate, it is the only thing that takes the burning sick feeling out of my throat!!!!
  2. Hello everyone, I went shopping today but had to sit in the car for 40 minutes in the carpark after walking around a little bit. I also ate a hamburger because I was thinking low iron, anyway I felt great afterwards. But one thing I also did was take 5mg of a pain med. I try to take it only when I need to do things, or if I can not get out of the chair. It stops my muscles from feeling so fatigued and all the pain goes so I get moving. The down side is it is addicitve, but only a small dose is needed. Also any higher dose than my body needs makes me nauseous. What my doctor has explained to me is we (with sclero) do not get enough REM (deep sleep) it is the same with people with fibromyalgia. A friend of mine with sclero put me onto the drug endep, which was developed as an antidepressent but works really well as a muscle relaxant, it also gives you a great sleep. I felt 70% better for the first few months I took it, that includes the rheumatoid arthritis. The problem is your body gets used to it and I now need such a high dose that it effects my liver, and makes me tired! I am varying the dose day to day so I dont get used to it. I have limited scler, with rheumatoid arthritis and so on, but I have really felt better. It still changes day to day, in the past week I have developed skin thickening and discoloration on my toes, and have generally felt worse. Best wishes
  3. Hello, I wrote a response to a very similiar post a few weeks ago, have a skim through the old posts. I saw the post mentioning achilles tendon pain and straight thought OH I was right. My achilles tendon has been feeling very tight and I have put it down to the scleoderma being a connective tissue disease My ankle has been hurting since December, and the doctors have been ignoring me when I mention it, until two weeks ago and I was sent for an xray. It is not arthritis thank goodness the doctor is not bothering to do any more investigating. The popping noise sounds dramatic, I would have to get seriously dramatic at my doctor if he ignored that symptom. I have had treatment with a therapy, which is a form of muscle manipulation and it has greatly reduced the pain. But now my back hurts. HA. Good luck and best wishes
  4. Hello, I have been experiencing massive amounts of pain in my feet!! I sit there and try to locate the precise spot where the pain is, and while I am flexing my feet or walking I notice my achilles tendons are really tight. I have too much weight on but I am sure it is only part of the reason. I have crest scleroderma, osteoarthritis, raynauds even involving my tongue, rheumatoid arthritis, and the rheumatologist has just said I have fibromyalgia, which I am not so certain of as thyroid problems have not been ruled out and I have polycystic ovaries. Just for good measure I also have a haemanginoma on my liver and my eyesight is fading rapidly. Anyway back to my ankle. It has been hurting for three months and the doctors keep brushing it of. I can hardly walk down stairs, the pain is horrendous at night time. Accupuncture helped. Yesterday I had a type of physical therapy, using a technique which rolls the muscles to help them release tension, and when he worked on my lower back, the pain in my ankle was horrible, like a knife. After the therapist told me to relax and go with the pain it was fine. Most suprisingly when I was home the pain was gone. So My theory is it is helped by the lower back being in good shape. I am going for x-rays this week finnaly. Best wishes
  5. Hello, it is interesting to see other people with organ pain. When I first saw my rheumatologist I told her I had pain in my left kidney. She very abrubtly said it musnt be kidney pain because organs dont cause feelings of pain. Also, just responding to Sherrill, the liver is huge, the largest part of it sits on the right side of the body and tapers over to left. It nearly reaches right across. Not that I have ever seen an open body, but my anatomy books say and show this. Last week I had to take more analgesics than usual and I had heat and pain radiating out from my liver region. I also had this yucky taste in my mouth, like I had drank too much alcohol, but I dont drink. Best wishes
  6. Hello, I was diagnosed with systemic SCL nearly two years ago, but sufferred with back and neck pain for nearly nine years. Along with this pain where all the little signs of scleroderma, indigestion and raynauds etc. My rheumatologist doesn't really focus much on the back or neck pain. I have been seeing a chiro for years which has helped. I finnaly had a lower back X-ray last year and it showed degenerative disc and facet disease in four spots, in other words arthritis. It's funny how the chiro didn't pick it up. So with that diagnoses I now know what activities to avoid, ie running (ouch) crouching, walking on uneven surfaces and some yoga poses. As it has been explained to me, Sclero affects the connective tissues, and these tissues such as ligaments and tendons hold our spine together. So weaknesses in these tissues means problems in our spine. It makes sense to me. Sitting is impossible for long periods, but on some days so is walking. I am slowly learning what movements I can and can't do, but we gotta move. best wishes
  7. Thanks Shelley, The doctor wants me to give myself another dose of Mthx, and keep a close eye on things. I gave myself my first injection last night, nerveracking but I handled it OK. Best wishes
  8. Thankyou Shelley and Janey, I know, all those things went through my head but I just hesitate to call the rheumatologist, her receptionist gets cranky plus I probaly dont like to admit to myself how serious things can be. I am on folic acid and I shall call the doctor ASAP TA
  9. I started on methotrexate injections two weeks ago and five days after the first injections I came down with a really sore throat. The glands in my neck are huge and I was aching, like the flu but all that came of it was a sore throat, but really sore. I feels like I have swallowed raw oats and hurts all the way down into my stomach, I can't eat anything but fruit and yogurt. i didn't have my second dose of methotrexate because I didn't want to weaken myself further, On friday I put myself on antibiotics and within hours I was feeling better, now there is just a slight porridge sensation. I am due for another dose of mthx tomorrow but I am a bit worried. Best wishes
  10. Hello, I had an appointment with my rheumatologist yesterday, and have come away with a better attitude than I went in with. I am having a flare up of limited Ssc with heart palpitations and very sore hands, the raynauds is going very silly, my tongue goes grey and feels tingly and my fatigue is back. My doctor and I have decided I need to go back on Methotrexate, I was on the tablets at the start of the year and they worked but made me very sick. So I will be having the weekly injection. My general practitioner will give me my first couple and then I will have a go at injecting myself. I recently went to a seminar for people with scleroderma and came away feeling more positive about living with the disease long term. The new drugs and the knowledge that constant monitoring is essential, as well as knowing what can happen if the disease is not treated has made me less afraid of tackling the symtoms head on. I also wish to thank everyone on the board for all the feedback on the treatments they are recieving. The comments on injectable methotrexate have given me the courage to tell my doctor that 'yes I am willing to try it'. Thankyou and best wishes to everyone
  11. Hello, Sorry to hear that your Guts are unhappy, it is really unsettling for my whole system and makes me grumpy when my tummy is funny. unfortunately my aches and pains are amerging after being in hyberanation for a couple of months. I have rheumatoid arthritis with Limited Scl and mornings are becoming very uncomfortable. I have osteoarthritis in two places in my back and that has been pain free for months, until now. A rather scary pain is my irregular heartbeat with the huge occasional thuds, this has been worsening over the past few weeks and now it feels like the muscles in my chest are strained. I go to my doctor on monday, but realise I should have gone sooner after reading some replies to my post about the chest stuff. I hope you win your game of solotaire. Best wishes
  12. Congratulations, It is a wonderful thing to help others, and from your posts I think you are well suited. I worked as a personal care nurse, going into peoples homes and assisting them and the people I worked with where some of the kindest people I have ever met. I was also very consious of exposing myself to illness, so I was always washing my hands and taking care not to touch my face. Also just generally aware of safety and hygeine. A nurse friend drilled into me the imortance of handwashing, even after wearing gloves, germs can get through gloves. Also make sure any cuts are properly dressed, because thats the most likely way for you to catch something. That also includes piercings, ie ears, dont touch the piercings unless proper hand washing techniques have been used. Because you will be washing your hands a lot, you will need to make sure you have a good moisturiser and a good cleanser. Most hospitals are very conscious of correct techniques and in Australia it is actually legislation for them to have the correct cleanser and moisturiser available. My friend said as long as you are aware of these things contamination risks are very low, and not to be afraid, just be vigilant. I hope all this is not too negative for you, I really mean it as a positive way of handling it. Best wishes
  13. Hello, I have been feeling good recently, my hands have straightened out and the skin is normal. I havent had pain or muscle weakness. That is until three weeks ago. I developed hay fever, and then a sinus infection which was painful and gross. As soon as the hay fever started I was fatigued and could hardly move, now my hand are stiff and sore and the skin is splitting. I have been experiencing an irregular heartbeat for the past week and half. Yesterday it started to get worse and it is making me feel so weak. I get big thuds in my chest and then light headed. My lung function tests have been getting worse but apparently the CT is OK. I am going to see the rheumatologist on Monday, but I am thinking I should see the general practitioner sooner, just in case. I tried doing breathing exercises but I end up with pain in my upper chest and my breathing becomes even weaker. I tell you this disease takes the confidence right out from under me. Its very confusing, usually I would just keep soldiering on trying to stay positive, but with this disease we need to be concious of even the smallest problem just in case it is a warning sign. Thanks for letting me whinge, Best wishes :blink:
  14. Hello, Sorry to hear about your discomfort. I have limited Scl, with rheumatic problems. For the last few months I have started to only shower every few days, with light washing in between. I come out of the shower very puffy, as this is what heat seems to do to me. Also I am very immoblile in the mornings with great weakness. The mornings where I live can also be very cold, so I did start to have showers in the afternoon, but then they can weaken me so I can't look after the kids. So for me the timing is important. I am in Australia and sometimes the water is so chorinated you feel like you've washed yourself in bleach. I have discovered a shower head that has a filter on it, which should get rid of the chemicals in the water thereby helping with some of the skin irritation. If you do have a bath be aware that weakness may prevent you rising out safely. Best wishes
  15. Hello Louise, My sore hands have been one of the biggest problems of my limited Scleroderma. I also have rheumatoid arthrits. My hands are much better at the moment and we dont really know why. In March my rheumatologist put me on Methotrexate. She said they use it in the early stage of the disease to prevent damage to the joints, and she said it may also help the scleroderma. I have also been taking powederd Magnesium supplement on the advice of my general practitioner. My Scl has eased, at least the skin hardening on my hands has. I have also not been working for a year now so I am thinking mabye that has helped. A hand exercise I heard about recently, and wondered why I hadn't thought of it earlier was just simply laying your hands down of a flat surface and trying to flatten them, very basic but if done a couple of times of day could really make a difference. Best wishes
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