Fibromyalgia

[livingwith]

Hi-my name is Kathy. I have been battling multiple health problems from a very young age. I have had the fibro, officially diagnosed anyway, for 20 years. I wrote a poem that I’d like to share:As I look up, I see her face.She looks young and well,but if you look into her eyes, you’ll see it’s just a shell.For inside, her muscles are so tight they ache with pain and she often wonders, when, the headaches will come again.Because they always do come though she keeps going without ...Read the full article

[phiggins]

Kathy,
That poem really speaks to me, and many others, I am sure. We really do live in such a private agony, that goes unnoticed by those we come into contact with...unfortunately, even our families. I was just thinking about that earlier today, so when I saw your poem, I was really touched.
What brought on your fibromyalgia? I believe mine began when I fell and injured my shoulder... about 12 years ago. I have fought accepting this, but have come to realize it's not going away, and I must slow down and try to keep my spirits up inspite of the pain, depression, etc.

Paula

[Kathypwpw]

Thanks, I'm glad the poem helped. I originally wrote it when I was trying to make family realize how badly I really felt. I've had the fibro since I was about 12 or 13 years old.I was diagnosed with fibrositis back in 1984 and the doctors told my family that I would grow out of it.I was officially diagnosed with fibro in 1990. I was diagnosed with type 1 diabetes at the age of 10 in 1982 and my blood sugars went crazy when I started menstruating at the age of 13 and that's pretty much when the fibro symptoms got bad. I don't honestly ever remember not being in pain. I have a number of health problems-the diabetes(which is still very brittle even though I'm on an insulin pump),asthma, arthritis, neuropathy from the diabetes, I've had kidney stones in the past but I think they were caused by an experimental pain treatment I was on at the time, something they call autonomic nervous system neuropathy(it can make my blood pressure bounce around, effect my balance and heart rate), slightly high blood pressure and cholesterol, allergies, migraines and I think that's all:). We lost my dad about five years ago and my mom had a stroke and suffers from dementia and is currently in a nursing home about an hour away. My daughter has a number of health problems, she's only 13-she was just diagnosed with the fibro, she has a disease called neurofibromatosis type 1 that causes a lot of problems(she has some neuropathy, tumors on her collarbone, completely wrapped around her liver, on her chest wall, above her left buttock and some scattered throughout her lymph nodes), migraines, severe asthma, allergies to antibiotics which is a problem because she has low immunity, weakness of her muscles which worsens as she tires as well as poor coordination, low weight, interstitial cystitis, Raynaud's syndrome, irritable bowel syndrome, brain fog and problems sleeping. I too have the Raynaud's, irritable bowel, brain fog and problems sleeping. They have problems treating both of us because we have such a combination of health problems that they don't know which condition is causing which symptoms so they have to experiment with treatments until they find one that works. I take my daughter out to the National Institute of health in Maryland every three months so that they can keep an eye on her tumors and in August she goes to a camp out there. This year has really been tough for her. She had problems in school, (she has ADHD due to the NF and she was missing a lot of school because of her immune system problems and the interstitial cystitis)and the school was saying that they were going to send truancy officers to the house and really causing a lot more stress for her. She ended up developing trichtotillimania(where you pull hair-it's an obsessive compulsive disorder) and she was completely bald by the time the school was done! It was mainly the school counselor on top of that. I pulled her out of public school and am now homeschooling her until she goes to another building and since her diagnosis she's been able to get treatment and is doing much better. Sorry,I didn't mean to make this this long, or tell you our life stories:), it's just to understand us, you kind of have to know everything! Anyway, thanks for the comment. I hope your doing well and that you'll stay in touch,
Kathy

[phiggins]

Jeese Louise,

It sounds like you guys have had a terribly rough time. What do you do to cope with allof these health problems? Do you have a good social network? I find friends are helpful to take my mind off of my pain, but I do not impose my issues on them...we all have varying degrees of problems. My husband is also very understanding,because he deals with clients with similar health problems. Well, I will be hear to be your lending ear. Hope your 4th if going ok. I am listening to a symphony of fireworks out the window here.

Take care,
Paula

[Kathypwpw]

Hi-we had a wonderful weekend. My husband took some extra time off of work(right now is his busy season, so we hardly see him)and we had a great family weekend.As far as dealing with the health problems, I just try to keep a positive attitude and I know that there are people out there that are a lot worse off than us. I just realized that I only have about five weeks before I start the flying back and forth to Bethesda for my daughter and travel really makes me hurt. The weather out there doesn't help either.I hope your weekend and holiday were enjoyable. No, I don't have many friends and most of them I don't have much in common with. I tend to get along better with people older than me because as a child my dad was injured quite seriously and I spent all my time with my older brother who is eight years older than me. So, I got used to being with his friends or alone with my animals. My animals get me through a lot. I can't tell you what a difference animals have made in my life:). That and right now the couple of good friends that I do have are nurses(big shock:), NOT). Anyway, I hope your having a great day and consider yourself hugged,
Kathy

[elfie]

Hi Kathy,
You should go for a Scenar treatment, I am sure it will help you.
Scenar Therapy is fairly new in Australia but beeing used in Russia, Europe, and now here.
Just put a search for Scenar therapist and go for a treatment you wont be sorry.

[Kathypwpw]

Thanks, I have never heard of scenar therapy, I will do some research. At this point I'd try just about anything. I went to a pain clinic for a while but all they wanted to do was dope me up and I have too much going on to be tired and dopey all of the time. They were unwilling to do any cutting edge treatments on me(anything to do with needles or infusions or injections) because of my diabetes.