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About lou56

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  1. Hi All, Thanks for your replies. It has helped a lot. Thank you, Lou
  2. Hi all, I went to my general practitioner about a sore knee; turns out I have another bakers cyst and had one two years ago. I had shooting pains up my legs and down to my ankles and couldn't roll over in bed without severe pain and my husband was having to help me up after sitting more than ten minutes and help me out of bed in the morning. After having an ultrasound for the knee my general practitioner sent me for a CAT scan on my spine, as my general practitioner thought I shouldn't be in as much pain as I was. Diagnosis was spinal stenosis, so I was sent to my rheumatologist with the results. Funny thing is I don't have any back pain even though my rheumatologist told me I had a very bad back and he is sending me for a MRI scan. Apparently spinal stenosis and bakers cyst is another form of arthritis. I have systemic scleroderma, fibromyalgia and osteoarthritis, so my rheumatologist says it is hard to predict which complaint is causing the pain. I will have the MRI on 20th September and see my rheumatologist on 22nd September and then he will decide what to do. It's all a waiting game. Does any one else have spinal stenosis? Thank you Lou
  3. Hi all I have been off and on steriods for years, with not a great result for the pain. As I was overdosed in hospital on steriods, I am very cautious and don't like taking them. I have had pain medication patches in the past and it is the only thing that seems to work for me. I recently have had a Bakers cyst that burst, and the pain was terrible, and my leg was three times the normal size. My general practitioner has prescribed pain medication patches. By the second day I am pain free, and walking unaided. This morning I did not have to get my husband to help me out of bed. If I could stay on the patches I would, but unfortunately you can't. Does anyone else have better results on the pain medication patches?
  4. Hi Pat All the best to you too. I am glad I'm not alone; but it does get a bit overwhelming sometimes. Hope your medication works for you. Regards Lou
  5. Hi Amanda I am glad to hear that I am not alone, taking all these drugs. I don't feel as tired as I used to be on the methotrexate. I take my dose every Tuesday night, and it works until Sunday, so those two days I'm in pain. The specialist did up the dose, so maybe he will again? He did say if this doesn't work he would take me off it and try something else, so time will tell I see the rheumatologist again in June, so I hope this works. Thanks Regards Lou
  6. Hi Jo Thanks for the advice. I will look at the links. Sometimes things just overwhelm me, with so much medication. I have noticed that I am not as tired as I used to be; it could be the methotrexate? I had to have a rest/sleep most days of the week, now it's only a couple of times. I will see my specialist again in June, so I hope that the medication will work. One year I was put on pain medication patches for my pain, it did work; but then you have to come off it and the pain comes back. I do hope that this medication works; at least I dont feel sick on it. Thanks again Regards Lou
  7. Hi Robyn Thanks for your reply it has eased my mind some. When I go to my specialist I usually go by my self; my husband still works full time, and all my family live 7 hours away. My husband did go with me a few times , when he was really worried about me, or couldn't get there by myself. I am lucky to have him; he has taken over most of the housework. It is very frustrating that I can't do all the things I used to do. You have to work around what you can and can't do and make the best of what you can do. I had a bad time and could hardly walk and ended up having physio at the hospital, and he suggested it would be good for me to join the Arthritis group so I could go to the hydrotherapy pool; well I joined and now go twice a week, it does give me a lot a relief, and there a a few ladies that have lupus, and four that have scleroderma. I have Osteoarthritis and Fibromyalga as well as the scleroderma; it's a nice group of ladies, and it gets me out of the house. I see my specialist again in June so time will tell with the methotrexate. Thank you for your advice Regards Lou
  8. Hi all I am a new member, and was diagnosed with systemic sclerodera in 2004. My recent urine test and bloods revealed protein, (kidney involvement) and my echocardiogram showed one side of my heart contained fluid - and was larger than the other side. Also both of my hands and feet were xrayed and both hands showed sclerosis - my left hand has been swollen for 6 months - and my rheumatologist took a photo; he was really amazed. After asking about my blood and urine test; all my doctor said was he wasn't happy at all about the results and didn't think my hand would get better. I have been put on Methotrexate to be taken once a week for six months, and monthly blood tests - is the methotrexate used as an immunosuppressant, the same as Plaquenil? Or is the Methotrexate being given to me for my heart and kidneys - or just for the swelling and inflammation to my hand? I am now on 20 medications per day, plus the methotrexate; this really worries me. Also my doctor said if the methotrexate didn't work, he would try something else? Is there someone out there with something similar happening to them? Cheers Lou
  9. HI all Thanks for the welcome to the forums. I appreciate that I am not alone. Lou
  10. Hi, I am a new member to this forum. I have systemic scleroderma-I was diagnosed in 2004,after two years of mystery illness-migraines so bad I would pass out and be confined to bed. I saw a rheumatoligist that told me that there was nothing wrong with me, and to go home. I ended up in hospital,and as I had had blood tests, the doctors knew I had something going on, having a highly positive ANA. I was given an injection of steriods, and more steriods to be taken orally, they were a massive dose, and had to take 10 tablets first day, then 9 the next day, until I was weaned off them. Strange things were happening to me, and I told my husband that something was wrong in my head. By the time I had taken the full dose of steriods I was talking to the walls not sleeping, and pacing the house like a caged lion. I ended up in a mental hospital, and was given even more drugs. I was admitted to this hospital close to my family, and was apart from my husband for more than 6 months. This was a very hard time for me, and was too scared to go back to the doctors to find out what was wrong with me, so I let nearly a year go by before I asked my general practitioner to send me to another rheumatologist. I now have a very caring general practitioner and rheumatoligist, and feel that I am now getting the best treatment possible. My rheumatoligist said that the massive dose of steriods probably sent me over the edge, and they wouldn't be giving me a dose like that ever again. He was not the rheumatoligist that prescribed the massive dose of steriods. Has any one else had a similar situation like mine?
  11. Hello Debz I know exactly what you are going through, Iwas diagnosed with Limited Systemic Scleroderma 4 years ago. I have the endoscopy every year, it is not that bad but I always get put to sleep for it. I havent been well for the last three months- had to have a full body scan- and am having hydrotherapy at the hospital pool- which is wonderful for the hands and feet. Do you wear hand splints to bed? that helps a lot also. When you get diagnosed you feel as if your the only person with this disease- in fact I had never heard of it. I had heard of Lupus- which is supposed to be in the same family. Im only new to this forum- but I hope by speaking with others - I will not feel so alone.
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