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About queenie

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  1. Hi everyone, I've not been in for a while had quite alot going on. I've been quite depressed lately and seem to have waited forever for my appointment with the specialist to come through. Anyway I promised to update you when I got my appointment and it is on the 24th June. I hope you are all keeping as well as can be. I will update you on the outcome. Take care. Hugs and Loves, queenie
  2. I'm in and dancing too :emoticons-line-dance: Congratulations on the good news Love and hugs :emoticon-hug: Queenie x
  3. WELL DONE SUSIEQ :emoticons-line-dance: I too will join the sclero dance what a great achievement :terrific: keep up the great work you are an insperation to us all you will get to where you want to be before you even realise it! :high-five: take care hugs and loves :emoticon-hug: Queenie x
  4. Hi, Back again I meant to ask before, does anybody know if steroids affect your blood test results for inflammation? Only I have just had some rheumatoid bloods done whilst on a high dose of prednisolone and haven't had the results yet but my nurse called today and when I mentioned it to her she said that it would lower any inflammation markers but surely my general practitioner should have known that. I am now just a bit confused :emoticon-dont-know: and am wondering will it cause a false reading or will I have to have more bloods done. Thank you in advance for any replies :emoticons-thankyou: Take care hugs and loves :emoticon-hug: Queenie x
  5. Hi Everyone, I am finally on the right road at last to a scleroderma specialist. my general practitioner just rang and said that the PCT have approved my referral to a specialist outside of our area and that she has done the referral letter which should be posted off today so my appointment should be through soon. I am so excited like a kid in a candy store and I suppose that sounds mad but I so need to get on the right meds instead of meds being added in for each new symptom I've run out of fingers and toes to count the amount of meds I am on. So as soon as I get appointment through, which shouldn't be too long she said, I will update you all. Things are not too bad at the moment fingers crossed and toes haha, the only thing worrying me is the 40 minutes approx journey to get to the specialist as she is not in my area, but hey I'll survive. If you can live with this you can find a way to deal with anything, right? Anyway hugs and loves to you all, :emoticon-hug: Queenie
  6. Hi Chopper, I to get an extremely red face after things like showering and it goes down onto my decolletage (don't know if thats spelt right) :blush: :rolleyes: ha ha but I get it after showering and I have also noticed that when I'm feeling really unwell this is one of the signs I get for a few days beforehand, a bit like a warning sign that I am going to have a bad flare up, and I can also get it when I over do it too much. Sorry I don't have any tips on how to deal with it though as I haven't come across anything yet that actually helps to calm it down but if I do you will be the first to know. Take care hugs and loves :emoticon-hug: Queenie x
  7. Hi, I attended my general practitioner last week to start the ball rolling to see an expert from the list here on the website and I was absolutely dreading it and thought she would deny it but as it goes I was worrying about nothing as she was glad to do the referral. She said the only thing was because the specialist nearest to me is out of our area she has to apply for the funding to be paid but she explained it all to me and said that there should not be a problem as I have already seen a local rheumatoligist in our area which is something they require before they will consider you being allowed to go out of your own health care so she has made the application and will ring me as soon as she hears from the board. She was very positive and seems to think there will be no problem at all; all I did have to do was to get a load of bloods done so she can include them in the application and a few more recent x-rays as it has been over twelve months since I had the full monty done. I hope things go as well for you take care hugs and loves :emoticon-hug: Queenie x
  8. Hi Jean, About the occupational therapist coming out to see you, I too have had them come out and assess me for my bed as I have to sleep sitting up a bit due to my breathing. There are two ways they deal with it; one way is to raise the head end of your bed with special blocks and the other way is to put an electric frame under your mattress which at the push of a button you can raise the bed to whatever position you want. This is the option I went for and it is great; I think this option is best as you can change position as and when you need to and it also helps to keep the pressure of the same place in your back if you are suffering with back pain. It also goes all the way up so you are bolt upright so if like me you have problems with actually getting up then this is a great help and takes away the need to be dependent on somebody else to help you get in and out of the bed. They can help you with many other things as well which I'm sure they will discuss with you when they do the visit. I hope you have a lovely time in Paris. Take care. hugs and loves :emoticon-hug: Queenie x
  9. Hi, can anyone help with this? I have recently come down with yet another chest infection which means more antibiotics and steroids, but I have noticed with this infection that the swelling in my hands has increased and they are even more swollen and pressured and the red patches seem to be somewhat larger as if there is an infection under the skin. Also the pain in my lower legs has increased to the point of it being so painful that it is causing me problems with walking and balance as although it is painful it also seems that my legs are feeling so weak and fragile. I was just wondering if any of you experience or have experienced this or something similar to this at times of infection. My elbows have become so tight and painful and have got that restless legs feeling right in the joint and just feel like screaming although that is not going to make any difference. I am just so fed up and wonder just how much more of this I can take. :emoticon-bang-head: I've gone on a bit but this is the only place I feel I am understood. hugs and kisses :emoticon-hug: Queenie x
  10. hi, I to have the same problem if I keep anything still for too long which can actually be a short time the stiffness and pain is immense but as I move around I do seem to free up a bit. i was driving the other day and just holding my hand in the position holding the steering wheel I had to pull over it was like lock jaw only in my hands the pain actually brought tears to my eyes and then after forcing them open the pain eased. love and hugs :emoticon-hug: queenie x
  11. hi karen, just a note to wish you a very happy birthday :happy-day: love and hugs :emoticon-hug: Queeniex
  12. Hi Christine, This is a great place to find answers to anything. I know when you talk to people who do not know or understand this illness they can make you feel mad but here no matter what your symptom is somebody, somewhere will understand or suffer with the same symptom and it does give you peace of mind. As for the swollen colour change hands I too suffer with that and they are so tight and stiff, more so when I wake up in the mornings. My hands will range in colour from red, whites to blues and this is associated with Raynauds but I also have patches on my hands that stay permenantly red; and as for the fogginess in your head I have days that go by when I can't even remember what happened earlier on in the day or can't remember conversations or arrangements I have made. The best advice I can give you is to take each day as it comes and each symptom as it comes instead of over worrying about them all. Some will stay for a short visit and others may stay for a while and some may stay for long term but just deal with each one at a time and take each day as it comes. hugs and loves :emoticon-hug: Queenie x
  13. Hello Barefut, I to am a single mum with! i am mum to 3 children and both physicaly and mentally and emotionally my life seems stuck in a vicious circle. if the kids want friends over I have to assess if I am going to be able to stay awake to look after them and if I am going to have enough energy to clean up to make sure the house is tidy. and on days when I dont have the energy I will sometimes push myself which can then leave me so exhausted if I sit down I will crash out. feeling guilty about not being able to just get up and go out with the kids and having to let them down so much and the times when the fatigue is so bad I will literally see them into school drive home and then sleep until an hour brfore I have to collect them at the end of the school day and not do a thing in the house. it seems I am constantly juggling and then out of the blue someone throws so many balls in unexpectadly that they all come crashing down if you know what I mean. i could go on for ever. just wanted to let you know you are so not on your own with these problems and it is sooooo hard I feel being a single parent without this illness thrown in but it seems to me that we all seem to get by as best we can in a bad situation although at times it feels like I am not going to get through this time but I do. take care queenie x
  14. Hi Ellie, I too have to agree that in the beginning it all is so overwhelming and seems so dark and depressing. But it is true that in time you can begin to see more light at the end of the tunnel. Maybe not as bright as you'd like but never the less a light. the best advice I can give you is to try and not look to far into the future about what may or may not happen as this disease affects everybody differently. Just take each day as it comes and do only what you can each day. Don't try to push yourself past your limits. Even if you take each day hour by hour, that's what I do as each day can be so different from the previous day and also some symptoms you experience may only stay for a short time and then ease away and others may stay longer. Now about your rheumatologist. If you are not happy with his/her manner you can always ask to see somebody else or to be referred to a specialist as I met a few unsympathetic doctors myself over the years and I feel it is important that you feel you can trust and relate to each other in order for you to feel comfortable enough to open up and discuss things with them. Take care. Hugs and loves, :emoticon-hug: Queenie
  15. Hi JD11, do you suffer from swelleing in your fingers? the reason I ask is because I suffer with this on both my index fingers exactly were you would wear a ring below the first knuckle and base I do not wear rings on these fingers however I think it may be down to the pulling and stretching in the skin being really tight and I too suffer with raynauds. hugs and loves :emoticon-hug: Queenie
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