Date: 25.05.2007
From: Tracy
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Subject: New Here :o)
I have just joined this forum and hope to gain some advice and tips along the way :o) My name is Tracy. I am 45, married and work in retail, where I spend most of my time on my feet running around and generally keeping busy! I have suffered with severe osteoarthritis in my spine and hips and knees for several years. This is now spread to my ankles, wrists and hands. Four decompression ops to my lumbar spine discs over the last two years have left me feeling no better. Next stop for that is fusion, which I am loath to have done at present. However, over recent months I have begun to feel overwhelmingly fatigued and had lots of headaches. I put it down to overwork and age and tried to carry on as usual. This culminated in a total collapse three weeks ago. My head felt like it was going to explode, my vision was very scant and blurry and I was rushed to the emergency unit at my local hospital in a semi conscious condition. I was placed on a drip for severe dehydration for 24 hours and started on steroid tablets (60mg prednisolone) immediately. Currently on 50mg daily. My diagnosis is not yet complete, with outstanding blood work still to be done, but my doctor says I have now also Polymyalgia and possible Temporal arteritis as well as the original arthirtis. I have to wait for at least 9 weeks to see a Rhuematoid Specialist for final diagnosis! Having felt quite well over the last two or three days, I set about doing some minor tasks at home. I thought I would be able to build myself up to going back to work in the next week or so. However! Today, I have now set myself back to the most crushing fatigue, headache, sweating etc and feel really deflated and cross with myself for pushing too hard with my body! I am normally quite a busy person, despite my arthritis and always dashing around. I am not good at being patient and find all this stuff extremely difficult to cope with. I am just not used to sitting around for long periods :o( Any advice I can gain to help me to learn to pace myself would be great and I look forward to spending some time reading through the threads on the forum, in the hope that I can re-educate myself, that not everything *has* to be done right away. I need to learn the art of moderation lol. All I can see for the future at present, is a great big black cloud over my life and after the smallest exertion, I find I need to lay down and rest. I have a headache constantly, which flares up more when I get exerted. It's just not like me and my husband and son struggle to understand how weak I feel, when they are used to me doing everything for them. It's frustrating for us all! I would love for someone to assure me that all will be well and *soon*, but sadly even my doctor cannot give me a time scale for when I am likely to feel better and get back to work. I'm sorry to sound so miserable, and thanks for reading and hope to chat soon :o)
Tracy
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Date: 25.05.2007
From: Lin Williams
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Subject: Re: New Here :o)
Hi Tracy, I'm really sorry to read about your condition, I suffer with sero negative rheumatoid arthritis and osteoarthritis in my hips, knees and feet. When I was first diagnosed I felt utterly gutted, I am a full time carer for my husband and felt this awfull dread that I would not be able to cope with looking after him as well as my self. Just over a year ago I was put on Methotrexate and folic acid and to this current day I am still getting extremely painful flare-ups. (today being one of them). The only way I can cope is on the bad days, do absolutely nothing, on a reasonable day I tend to do cross stitch, I found this works in keeping my hands mobile, I potter around the house and have found a new joy, gardening, although bending and kneeling is painfull I get great satisfaction from seeing the end product, my garden is now in full bloom and the scent from the flowers is incredible. The only way I could make my husband and 13 year old son understand was to sit them down and explain to them how I feel, I also take my husband along to doctors and hospital appointments so he can get a better understanding of the desease its self. My son now helps around the house, I have shown him how to cook basic meals and how the washing machine works, and just recently he is learning how to help with the ironing (but only gave him the old t-shirts to learn with, the good ones are mine). It's just nice to have the co-operation on the bad days, life is looking better. I do tend to go for short walks whether rain or shine to try and keeps the muscles from cramping and wasting away, although painful I also find it helps with the sanity. I found being at home all the time really frustrating at first, when I was working, I was a secretary, typing all day long and using computers, running from building to building with enquiries I enjoyed my working life, then 2 years ago my husband suffered a heart attack followed by a further 7 in the 3 months that followed. He has been put on long term warfarin which means that when he cuts himself, I'm there with plasters, bandage and compression pads just in case.(the silly fools faints at the sight of his own blood) so working was no longer an option. All I can say is it will get better with time, it has taken me the last two years to realise that my life would not be the same again, and apart from the pain, headaches and the shear frustration at times, I wouldn't change a thing. I have a fantastic husband and son. My only concern is the medication I am taking as the side effects are not pleasant, but I am due to see the RA clinic again in a few months so maybe they can do more. I hope this helps in some way, but if your are honest with yourself and others, it can get better.(it's taken me 6 weeks of therapy to be able to say this). Good luck and write soon, I find it helps when you can chat to someone to experience similar things. Lin
Bristol
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Date: 26.05.2007
From: Tracy
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Subject: Re: New Here :o)
Thanks for your advice Lin. I have sat and had a chat with my husband about how I feel now and he understands. My son is going to be the problem I think. He is 20 and has an autistic spectrum disorder (Asperger's), which means he cannot fully understand a lot of things - other people's feelings or needs, being one of them. Our older son and his wife tried to chat with him about this yesterday in a brotherly way, but I'm afraid youngest feels vulnerable and that since we are the parents *we* should be taking care of him, not the other way around. He does get resentful at times when asked to help with minor tasks, but we hope in time, he may be less so. Like you, I also do cross stitch, but have found I am not able to see clearly enough at present to do it. Still I am trying to keep mobile as much as possible and do spend some time on my pc tracing my family history which is fun :o) Can I ask what benefit does folic acid have? I take several vitamin and mineral supplements and just wonder if it is worth me trying that one too? Thanks for your help. I appreciate it :o)
Tracy
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Date: 26.05.2007
From: Lin Williams
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Subject: Re: New Here :o)
Hi Tracy, From what my GP and Rheumatoid specialist tells me, folic acid basically replaces certain vitamins etc that the methotrexate take. (I don't fully understand). All I know is that is stops me being sick after taking methotrexate. The only way for sure is for you to ask your GP about the advantages of taking folic acid. As for not seeing clearly doing cross stick, have you tried using a lap magnifyer (they are available through cross stitch magazines)?? I also tend to sit under a lamp which aims the light directly onto the fabric. As for your 20 year old son, although he does have a medical condition, resentment of doing chores is quite natural, we have been through it with out 23yr old son, 21year old daughter, 18 yr old son and sometimes the 13 year old, they do however, realise what we were saying when the 3 eldest moved out on their own and struggle with work, going out, housework used to wait, until they wanted to take girlfriends, boyfriends etc to their homes, now their housework seems to get priority. Thanks for replying though and I'm really pleased you were able to explain to your husband about your feelings. Hopefully will chat to you soon, at moment I'm having a really painful flare-up so typing is difficult at moment. chat later Lin
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Date: 13.06.2007
From: Lin
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Subject: Re: New Here :o)
Hi Tracy, Just a quick note so see whether you are still visiting this site, hope you are well and not in too much pain. If you can write soon to let me know how you are doing. Regards Lin
Bristol
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Date: 22.06.2007
From: Georgina
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Subject: Re: New Here :o)
Hiya I have had RA for about a year now and am on a combination of three medications and a lot of painkillers. I still work full time but am finding it very difficult at the moment being on my feet all the time. I am waiting for another session of intravenous prednisilone as this seems to help short term when Im at my worse. I feel very lonely sometimes, my family are very good but they dont really understand how I feel, my life has changed so much and Im not the person I used to be. I just want my health back but I know this is not going to happen. I put on a face for my family but inside I am sad.
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Date: 23.06.2007
From: Lin
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Subject: Re: New Here :o)
Hi Georgina, I have been an RA sufferer now for just under 2 years, at times the pain is unbearable,and the lonely feeling can sometimes creep in, but I always think about those who are worse off than I am and say that if they can get through it, so can I. I care for my husband full time, so I had to give up work 3 years ago. My only advice to you is don't bottle it up, if you want to cry, scream or just be you then do it. Have you tried explaining to your family how you feel (it does help, by the end of it they will understand to a degree). As for getting your health back, you can, don't give in to it, fight, you can do it but it will take a while. Good luck Lin
Bristol
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Date: 23.06.2007
From: Georgina
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Subject: Re: New Here :o)
Hi Lin Thanks for your words of encouragement, they do mean a lot, hope you are ok at the moment, take care. Georgina
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Date: 01.07.2007
From: Gina
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Subject: Re: New Here :o)
Hi Lin,Tracy,Georgina
Just wondering how you are doing at moment? thinking of you all. Yes you will survive, you may not got to back to your usual self but you can move forward and learn new things that you wouldn't think you would be able to cope with. New skills such how can i control anger,frustation etc,etc.By chanelling them into postive outbursts, could be learning to do deep relaxation listening to music never had chance to do,learning to do things that you wouldn't thought off in a different way.working out how to change things that are negative into a positive aspect.Be proud what you can do to the best of your ability"i've done my best to how i am today" "Love yourself no matter what happens you are SPECIAL AND UNQUIE AND PRECIOUS"iF YOU DO ONE POSITIVE THING maybe giving someone ,cheer someone up, made a cup of tea without forgetting to turn the switch on.Take Care
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Date: 02.07.2007
From: Lin
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Subject: Re: New Here :o)
Hi Gina, Nice to hear from you, your words are encouraging as I am feelin really down at the moment, having an extremely painful flare-up at present, and can hardly move. Have been sick for about a week now, been to doctors and he has advised me to stop taking the methatrexate for 2-3 weeks and give myself a break as the lowered dose of 17.5mg isn't strong enough to make a difference. I am also suffering with my teeth at the moment which is due to the meth, so dentist gave me some antibiotics, but they too have reacted because of the meth. So this week I start not to take it, instead take the anti-sickness pills and a full 2 week course of antibiotics to try and get me right. I have to see the Rheumatoid clinic in August so I have to start taking the methatrexate again a week before my appointment, so they can see what it's doing to me. Have just started losing my hair and nails again and have the most foul taste of copper in my mouth, feelin really sorry for myself. I can't type any more,( really painful) so I will catch up with you again. Lin
Bristol
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Date: 04.07.2007
From: Lin
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Subject: Re: New Here :o)
Hi Georgina, Tracy & Gina, Just a quick catch-up. Went to see GP again on Monday and had blood tests done to see what my levels were doing. I have today received a phone call from my GP, my liver function result is through the roof at 186 and my platelet count is down to 202. GP has confirmed that I am suffering from a mild case of hepatitis so I have to stop taking the methatrexate altogether. (She is hoping that my liver will recover), but I have to have more blood tests on Friday this week. If my liver is not recovering I am being referred to a specialist urgently. Will keep you all informed of the outcome. (really worried at the moment). Lin
Bristol
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Date: 28.05.2008
From: Laura
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Subject: waiting to get care
Why is it that you have to wait months to get into a RA specialist then they will not give any confirmation of disease either way? I was given an OLD NSAID and "see you in a month if you want to be seen" despite continued swelling and deformity 12 weeks after an obvious RA flare. Blood tests all point to RA as well.
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