AboutAmelia Yaussy Expertise I can answer questions about systemic scleroderma and live and internet resources to help you cope with this disease. I have personal experince with scleroderma, osteoarthritis, fibromyalgia, and Sjogren's Syndrome.
Experience I am a systemic scleroderma patient (12 years) and have been active in support online for nearly the same amount of time. I proposed the Usenet newsgroup alt.support.scleroderma and own the website ihavescleroderma.com.
Organizations I am a board member and volunteer for the Scleroderma Foundation, Ohio Chapter.
Publications Arthritis Today, Sept 1997, "A guide to the internet"
Education/Credentials International Webmasters Association, Web Technologies Certification
Awards and Honors Volunteer of the Year, Scleroderma Foundation, 2004; Advocacy Appreciation Award, Scleroderma Foundation, 2005
Ok.. I have been sick forEVER!! Since they couldn't find anything wrong with me after about 8 years they said ok you must have fibromyalgia. I basically don't sleep for crap and I wake up most days feeling like I got run over by a truck and then by the end of the day I feel like the same truck ran over me 20 more times.
Ok here is my issue.. My regular doctor sent me to a rheumatologist who said the only lab test that was not WNL was epstein barr and he said just about everyone has a positive epstein barr so he said ok there is nothing rheumatology related wrong with you so he shipped me back to my regular doctor. I worked up until last year as a paramedic and on my last day of work I was crawling out of work on my hands and knees. I used to be able to carry 300 pound patients and now I am lucky if I can lift up a milk jug. My neurologist who I have been seeing for a sleep disorder for as long as I have been sick says I don't have fibromyalgia because I would need to have both a positive epstein barr as well as an elevated sed-rate. I am like WHATEVER people!! So he says I have chronic pain syndrome.
Ok so now I am fighting with social security and I am going to lose because even my own stupid doctors can't agree what is wrong with me. The only thing I know is that I feel so crappy that I can't do anything and life just sucks. They are going to shut off my electricity because I have 0 income. I have lost over 40 pounds because I can't afford food and the teensy tiny bit of disability I get (a whopping $167 a week) puts me over the limit to get public assistance or SSI because I don't have kids. I just wonder if you have any suggestions on how this can be easier? I can't afford my medicine and I can't get any assistance, I can't afford food and can't get any assistance. Luckily I was smart and bought a house years ago while I was still working but I already took out the equity I had in that to survive for the past 2 years. Now that is pretty much gone and winter is coming up and I am pretty much screwed.
Any suggestions? I really don't want to live in a cardboard box.
Thanks
Answer I'm so sorry for all the pain and trouble you're going through. Fibromyalgia is a diagnosis of elimination, meaning they try to rule out everything else before they are certain. I'm not sure what your docs were talking about with an "Epstein Barr" test - these are the only criteria I know of: http://www.rheumatology.org/publications/classification/fibromyalgia/fibro.asp
You are in a difficult position with SSDI if your docs aren't helpful and knowledgeable. Perhaps consulting with a lawyer would help - s/he could help accumulate the evidence you need, even if it means going to another doctor. Lawyers for disability are usually paid out of your settlement for back payments, so no cash should be needed up front.
I'm sure one of the reasons you feel so bad is lack of medication. There are more possibilities with getting it than just public assistance. Try the Partnership for Prescription Assistance at https://www.pparx.org/ You may qualify for some help despite your "whopping" disability. Also, check with your doc about inexpensive over-the-counter meds to help, especially with the sleeping. People with muscle pain can get into a terrible cycle where lack of sleep causes muscle pain, which causes lack of sleep, etc.
Another place to try for some temporary help with bills is Modest Needs http://www.modestneeds.org They help with one-time needs, like a car repair bill - the kind of costs that are difficult for someone living paycheck to paycheck to make.
I know the last thing you want to or feel able to do is exercise. I'm not going to suggest weight training, or a membership to the gym - just take a walk, every day. Don't set any goals or try to achieve a certain mileage. Don't even try to go at an "exercise" pace at first. Just get out and move as far or long as you can without making yourself feel like total crap. It helped me to have a dog who wanted to stop and pee every half block, so even stop and "smell the roses" once in awhile for a breather. Take a friend or neighbor along, even. This is so counter-intuitive to what your body is saying - "I'm tired and I hurt, so fold up and lay there." But you see how that's going for you. Moderate exercise, with consistency, can help.
All of this takes more effort for you, and I understand the frustration of that - shouldn't someone be taking care of us since we're sick? It's the worst irony of chronic illness that at your sickest, you end up having to do more for yourself. That's not saying friends and family can't help with the ocassional casserole or vacuaming the house and you need to feel okay with it - they want to help. Only you know what you're dealing with everyday, though, and can best seek out the kind of care you need to feel better. This method of "time management" has helped me tremendously during the worst of fatigue: http://www.immunesupport.com/library/bulletinarticle.cfm?ID=6340
If you haven't sought out support online or locally live, you should. Fibromyalgia or not, you aren't alone in chronic pain and fatigue, and others may have more and better suggestions for your problems. At the very least, they can relate and support you in your efforts to find a diagnosis and get better.
