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Living With Fibromyalgia - Online Support Group

Feeling Hopeless

#1

I’ve had a bad case of fibromyalgia for 20+ years, and it has been getting m worse for the past year and a half--to the point where I can’t work and spend many days in bed, in too much pain and too exhausted to even watch TV or read.

Also, I recently had a new pain for a month on the right side of my abdomen—like a runner’s “stitch” or cramp. (I normally don’t have any FM-related abdominal pain.) I had a low-grade fever the whole time that still won’t go away—don’t know if the fever and abdominal pain are related or a coincidence. My GP thought the pain was in my liver—chemical hepatitis from taking FM medicine for so many years. But the tests were negative, and she told me to just wait and see. My chronic-pain dr. says the fever and abdominal pain are just related to FM, as he says with any new pain I have.

Not knowing the cause of FM is so frustrating. Some of the well-meaning people in my life just don’t’ think of it as a serious illness because it’s so mysterious. Two people close to me have friends who have very mild cases of FM, and so my family and friends wonder why mine is so serious, and I think they sometime question my honesty. I send them articles about FM and chronic pain/fatigue but it doesn’t do much good.

My health is so bad now that I had to quit working. I had one job for a very long time and was good at it, worked really hard at it. It was a source of fulfillment and pride even though it was a terrible struggle to get work done while feeling so sick. After I lost that job, I worked part-time freelance from home for a few years, but that job ended (through no fault of my own) and I haven’t been able to find any similar opportunities.

Due to a disability unrelated to FM (I’m legally blind), I can’t drive and don’t feel well enough many days to walk to a subway or bus stop, esp. In the summer heat, so I’d need to find at-home work with very flexible hours that I could do on my computer with magnifying software.

I recently moved to a cheap, poorly maintained apartment (to save money on rent) and am so exhausted that I haven’t been able to do much unpacking yet. I have stacks of cardboard moving boxes that I work on gradually, and the landlord Is upset about it. He even called my boyfriend—without my permission or knowledge--to ask him to do something about it but never talked to me directly—as if I were a child.

My best friend doesn’t live close enough to help and is very busy with her children. My boyfriend has helped some but he has a job, young children, and a time-consuming medical problem of his own. I have only one nearby family member, and she has no patience for helping with things like this unless she can take over the project and do the whole thing her way. She would criticize me constantly and put things away in places where I wouldn’t be able to find them, throw things out, etc. I’m not speculating—other family members and I know this from experience. I might be willing to accept that kind of “help” anyway out of desperation but she said she’s too busy at work lately.

I don’t have the money to pay a stranger to help me unpack, and, anyway, I hate the thought of having a stranger in my apartment, unpacking my personal possessions. I’ve very private, and I’d also have a hard time explaining to a healthy person how I could have things in such a state of disarray. I don’t look sick, or at least people tell me I don’t, and many people have a hard time understanding the whole situation.

I took a medicine years ago for FM called Lamictal. It’s an anticonvulsant that my dr has success with once in a while with his intractable chronic-pain patients. It made my pain worse and made me extremely tense, irritable, and angry. However, it gave me energy for the first time in many years—kind of an unpleasant manic energy. I got so much done while I was on it. It has very serious, potentially deadly long-term health risks, though—including some things that run in my family-- and I feel awful on it physically and mentally.

Last time I took it was when I still had my job, and my boss went away for 2 weeks and I had to do some of his work in addition to my own. I asked my dr to prescribe Lamictal, and I got all the work done—well—but the side effects were so bad that my body felt damaged for 3 months after I stopped the medicine, and while I was on it, no one wanted to be around me because it put me in such a bad mood all the time. I’m worried about how I’ll act around my BF’s kids if I take it again, or if I’ll tell off the landlord finally and lose my lease, start an argument with my BF, etc. The first time I took it, for months, it also made my hair fall out, my skin break out to the point of scarring, etc. (I think this is because it raises testosterone in women, hence the energy boost.)

But if I don’t take this medicine again, I think I’ll end up either homeless or moving to another state to live with my mother for the rest of my life. I’ve tried all sorts of other energizing medicines and supplements, such as caffeine, Adderall, coconut oil, amino acids, dark chocolate, Ritalin, Provigil, Nuvigil, etc. but nothing works nearly as well as Lamictal.

So I’m trying to wrap my mind around the fact that I need to either take this medicine again for a few months to get my apt. and life in order or I might soon have no place to live, no job, no money, and no transportation. I might even need to stay on it indefinitely.

I’m usually creative and resourceful but in this case, I don’t see any solutions. I’m on this site mainly to vent; I know no one out there can come up with a solution for me, but it’s nice just to know that people who have been through similar situations will relate to this on some level. Thanks for reading.