HAIHM: We are speaking with Janet about her Fibromyalgia. Thank you for sharing your story.
JANET: My pleasure, I’m happy to share.
HAIHM: I did not know a lot about Fibromyalgia until I did some research for this interview, so one of the things I read and discovered is ‘it hurts!’
JANET: Yes!!! It hurts very bad. There are a lot of people who suffer with this.
HAIHM: what exactly is Fibromyalgia the way you understand it?
JANET: It is wide spread muscle pain and tenderness. It effects your nervous system and the nerves in your body. It is very painful. Sometimes there is pain in certain places and sometimes there is pain throughout. It is mostly in my back, my knees, and well really everywhere. My legs really hurt where the pressure points are. They get very sore.
HAIHM: When you first started suffering from this did you have any idea what was going on?
JANET: No, I did not know. I went to the doctor and he performed a lot of tests. I was given shots and medicine but that didn’t work very well.
HAIHM: Do you think your doctor knew what was wrong with you or just trying different things to see if they worked?
JANET: I think he knew what was wrong. He did diagnose within about three months. I also went to see a psychiatrist and he prescribed some medicine. It’s been about 20 years ago since I was diagnosed with chronic fatigue and about ten years when they called it Fibromyalgia.
HAIHM: I was reading some of the symptoms are muscle pain, burning, twitching, or tightness. A low pain threshold or tender points. Draining fatigue. Trouble concentrating and remembering. Insomnia, not sleeping well, feeling nervous, worried or depressed.
JANET: That is all true. I have experienced all of those things. When I have a bout, I have to go to bed. All you can do is go to bed and sleep. It’s totally exhausting.
HAIHM: So, when you started experiencing these symptoms and you didn’t know what you had I imagine it was pretty frightening?
JANET: You’re right. I didn’t know what I had. I knew something was bad wrong with me but I didn’t know what it was. My doctor conducted complete blood count, checked my thyroid and my Erythrocyte Sedimentation Rate. With the results of those tests, he diagnosed me with Fibromyalgia.
HAIHM: So, there are certain tests they can do to confirm this?
JANET: Yes, these tests point to Fibromyalgia.
HAIHM: Were you working at the time?
JANET: Yes, I was working. It affected my work, my thoughts. I couldn’t concentrate on what I was doing.
HAIHM: When I was researching this, I read that like cancer treatments one can get “chemo brain” from the chemotherapy, meaning you have trouble thinking. With Fibromyalgia they call it fibro fog. Do you feel like you suffer with that?
JANET: Yes, it’s like a fog. When I was working, I couldn’t focus on what I was doing. It was like I was here, there and everywhere!
HAIHM: Going back to when this first started what were your symptoms?
JANET: I hurt. My legs, just to touch them it hurt. My back and my knees. If you would barely touch my leg it hurt really bad and if you accidently hit it hard – oh my, it really hurt. My back hurt so bad so my doctor sent me to a back specialist but there wasn’t anything wrong with my back so that at least was good news. It wasn’t like I needed surgery or anything because of my back or my spine.
HAIHM: That was good news but probably still frustrating because you still didn’t know what was wrong. Where does this come from, do you know?
JANET: I don’t know. I don’t know if the doctors know.
HAIHM: My goodness, so is there a cure?
JANET: No, no cure. Every year you just get worse. So; you just learn to manage it. You learn to manage your own pain. I wore a pain patch and I tried hydrocodone but it didn’t do much good.
HAIHM: Is there anything that causes it to flare up or get better?
JANET: Sometimes, it seems like the weather. Maybe certain things you eat but it seems like the weather affects me more. The damp weather makes it hurt, the warm weather helps. Diet doesn’t seem to affect me one way of the other. I’ve lost weight and I’ve gained weight and neither one seems to be any different.
HAIHM: Well, you’re probably not able to be very active because of the pain. I seem to think that exercise can help a lot of things but I guess with this it doesn’t help?
JANET: No, no I can’t. I try to walk a little bit. I like to walk to the mail box but that’s about it for me.
HAIHM: What have you learned about this that allows you to better cope with it now?
JANET: It wasn’t as bad as it is now. It seems like every year it gets worse. I don’t know what’s going to happen. It can be debilitating. I don’t do much at home. I have to really pace myself. I know I can’t do a full day’s work so I do what I can. Somedays I can’t do anything because I hurt.
HAIHM: Do you attend any support groups? Did anyone invite you or suggest for you to attend a support group?
JANET: No, nothing has ever been brought up to me to attend. I don’t know if I would or not because some days I might feel like it and other days I don’t feel like doing anything.
HAIHM: Do you have any advice or tips to give to someone who is living with Fibromyalgia or newly diagnosed?
JANET: Just keep your faith, keep tracking and keep it going. Learn to pace yourself. If you can do something on one day okay, do it, but if you can’t do anything on another day, then don’t do it. Just don’t over do it. Pace yourself. Rest and let your body rest. Don’t try and work through this but let your body rest. I do get massage therapy once a month. My muscles are so tight it’s really a great help. I’ve learned life isn’t what you thought it was going to be so I’ve had to learn to deal with it. I go for a drive or something to get my mind off of it. Just take it one step at a time. Sometimes, I have to just walk around the house two or three times to get it off my mind. I would not wish this on no body.
HAIHM: I’m so sorry to learn about this awful disease. Unlike some diseases this is more of a ‘hidden disease’. People don’t realize you’re hurting so much with this.
JANET: That is right. People think, “oh you’re okay, or you are trying to get attention, or maybe you’re lazy” but you’re not. You hurt.
HAIHM: Janet, thank you so much for sharing your story. I think it’s important when people share their story because I believe it may help someone else who is suffering with the same thing. They may think “well, she’s living with this and making it so I can to”.
JANET: That’s right. We still have a lot to live for. We just have to keep going and do the best we can.
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