It’s been about three weeks (I think..four?) since I got pulled off of my meds. Not my pain meds, but all of my meds except of the ones that I take for my Neurally Mediated Hypotension and Topamax for migraine prevention.
When I was diagnosed with fibro and CFS in August, I was taking Topamax and Indural for migraine prevention on a daily basis, and an OTC vitamin D supplement. I had several different “as needed” Rx meds for different things such as asthma.
I also had a drawer full of mostly full bottles that had been prescribed by different doctors who had seen me over the last seven to eight years. The bottles were full because the drugs inside hadn’t helped me. They had made my symptoms worse, had made me fall asleep or had made me nauseas. Some had done nothing at all. The drawer represented hundreds of dollars.
I had walked up and down for each of the doctors in turn, for about three to four feet. I had followed their little pencil with my eyes. I had watched as my knees bounced up and down when they hit it with a rubber mallet. I had electrodes attached to my arms and legs and was shocked with electricity (yes, it hurts) and stuffed inside tubes so tight that I literally could not move a millimeter, and am now claustrophobic in enclosed spaces.
Physical therapists that I saw commented that my startle reflexes were hyper-sensitive, and some of the doctors also commented that my knee jerk reactions were exaggerated a well. One leg was significantly weak. I had loss of sensation in one thigh. (This is the ONLY thing that was ever confirmed – there’s a major nerve that runs through the pelvic cavity into the thigh. Mine is pinched. If I lost about 30-40 pounds it would get better. I’ve lost almost 60 pounds and the sensation hasn’t come back. Hmmmm…)
While the doctors poked and prodded and stuffed and shocked and my body continued to twitch and spasm, I started to forget things. I’d go to the grocery store for toilet paper and walk around for 10 minutes, knowing that I’d forgotten the reason I was there. I lost words, single words when I was talking and people got used to filling in parts of my sentences for me, and some words for months on end. The brain will fill in with close substitutes, but if you ask a waiter for cutlery you WILL get an odd look from him.
The constant through all of this was pain. The muscles in the back of my thighs hurt continually. On the infamous pain scale with 1 being no pain and 10 being you want to rip someone’s face off, the left thigh was about a 5-6 and the left was a 2-3 for about 85% of the time. My calf muscles were both at a 4, also about 85% of the time. My upper arms started to chime in. My back muscles would spasm and cramp.
There were other things as well. My vision was blurring. I’d had minor symptoms of irritable bowel syndrome for awhile, usually when I was upset – it had kicked in full force. I started to have “personal earthquakes”, where I’d be walking or standing feel and it would feel like the earth had shook. I’d loose my footing and have to catch myself from falling. One time I DID fall while crossing the street.
The answer that I got from all of the doctors? There was nothing wrong with me. If I lost weight it would all be better. They’d give me the prescriptions to treat the symptoms though. They all agreed that the symptoms were real.
This all took place over about a six year period. I had two MRIs. I had an EMG. I was referred to four different neurologists. I was told that one of them was the BEST neurologist for people with my symptoms in the Northwest. My physical therapist notes and test results had been forwarded to him, and when I called to schedule the appointment he was booked out for two months.
I didn’t actually see him. I sat in his empty waiting room for half an hour and asked his receptionist if she knew how much longer the wait would be, and she said that she thought he would be right there. No one came in or out and the phones weren’t ringing…. Half an hour later I asked again and she said that his prior appointment was running behind; he was at the hospital. I called work and told them that my appointment was running behind. Half an hour later I asked again. She hadn’t heard anything from the hospital but he knew he had appointments that morning. (Appointments? I was the only one there.) She’d be glad to reschedule me if I couldn’t wait any longer. He had an opening in about six weeks. I said that I’d wait another ten minutes. As I walked away she slid the glass partition closed, but it didn’t close completely. I heard her talking to someone, asking if they knew where he was….he had someone waiting in the office. (That would be me.) She said something about he was on the range? A game that morning? I went back up and told the receptionist that I was leaving. She asked if I wanted to reschedule and I thanked her and said no. I had had to wait for his office to review my referral before he would agree to see me, then I had to wait two months for the appointment. I had spent an hour and a half waiting and he had apparently forgotten that he had the appointment with me. I’d find a doctor who would at least remember to come into the office. She asked if she could have him call me, and I declined.
I got back to work and settled in, trying not to let my head pop open from frustration. Later that afternoon I got a call from him. He didn’t apologize at all. He said that he had looked at my test results, and they were all normal. There wasn’t anything wrong with me. He didn’t understand why I might be having any of these symptoms, and maybe I was exaggerating them. He noticed that I was overweight, and if I lost some weight I’d probably notice that I felt better. This was several years ago, and I hadn’t been beat down by enough doctors yet so I didn’t say what I was thinking.
About 10 days later I got an Explanation of Benefits in the mail from my insurance company for a complex office consultation. I had worked with reviewing injury claims and bills enough to know that he had billed for a full, face-to-face, minimum time of one hour visit involving a detailed exam and diagnostic evaluation. The charge to my insurance company was over $400.00, and my co-pay amount would be $35.00. The length of time between when I put the EOB down and when I dialed the phone was too short to be measured. I explained to my insurance company what had happened and that I had said that I did not want him to call me. I also let them know that the total amount of time I had spent on the phone with him was under five minutes. They agreed that he should not have charged for this, and that they would be contacting him. I got three bills from them for my co-pay. Each time I got one I called their accounting department and let them know what had happened, and why I wasn’t paying it. Eventually the bills stopped, so they must have figured it out.
So what does this have to do with my going off of my meds? The end result of my drawer full of useless meds and lost money is that I know have fibromyalgia. It hasn’t been scientifically proven, but it’s theorized that long-term unresolved pain can lead directly to fibromyalgia. The neurons go into crisis mode and start screaming for help, 24/7.
I’ve also been diagnosed with Chronic Fatigue Syndrome. I think that I had the seeds of this years ago. My sister also had it. Possibly the long-term pain also kicked this into action.
I’m keeping the meds that I’m stopping. I don’t want to start taking them, but I’m aware and have accepted that I may start taking one or more of them again. I’ve had one major bad day and it was a combination of many things, not just the removal of the meds alone. I have had to take a lot of the migraine relieve medication – that’s one GOOD thing that the toxic cocktail had done that was good. It had really effectively controlled my migraines for the first time in years.
I have the chronic low grade headache again. The muscles in my back are spasming up but not too badly. My sleep is down to five hours a night. I can think clearly again, and I’ve got some concentration back. I feel like I’m in a better mood, and my sense of humor is also better.
All of the symptoms that started this craziness are still here. They have waxed and waned in severity for years, and have played tag with each other and they’re still doing this. Some of the things that the doctors were thinking might stop, the neurological symptoms, haven’t gone away. The hard thing is that they’re not consistent.
The really good thing is that I DO have some doctors who are behind me now. It was the Neurally Mediated Hypotension that drove me to the doctor who recognized that something really was wrong. She referred me to the Neuro-Muscular doctors at OHSU, who recognized the Fibromyalgia. They also caught some abnormalities in some blood tests and asked me to let my primary doctor know about them. I think I hit the jackpot, and chose a great person for primary care. He is wise enough to admit that he doesn’t know everything there is to know about medicine, and I’ve been his medical guinea pig for the last six months. He wasn’t sure what to do with the abnormal test results so sent me to an Infectious Disease Specialist, also at OHSU. I’m not sure why he sent me to him, but this doctor seems to like figuring out mysteries. He’s sent me to an Ophthamologist and an Endocrinologist. The Fibromyalgia team at OHSU recognized my Neurally Mediated Hypotension and got me the information on how to get referred so I could get the testing to confirm this diagnosis. And my primary care person spent hours of his own time researching the condition to find out how to control it, as there really isn’t medication for it. I also found a great doctor who specialized in Fibromyalgia. She pointed me to an online support group, and the people there have probably been the greatest life saver of all.
I’ve got two drawers filled with medicines that I’m not using. As soon as the next day comes to drop of old, dead medications I’m going to drop off the old drawer that never worked. Right now I don’t have a need for any in the “fibro” drawer, except for the ones that help me to sleep. I don’t WANT to take them though as they seem to be the ones that were making me the “foggiest”.
I’ve got a lot of ideas bouncing around in my head. I hear different things that people do every day that works to help them deal with their paid, and the frustration. They handle the fuzziness inside their heads. They manage dealing with cramping constipation at breakfast and horrible twisting, run-for-the-bathroom diarrhea at noon. Most of them don’t want to take prescriptions. Some of them don’t take any and a few might take too many. Once in awhile I’m afraid that people mix them up purely because they’re not thinking clearly because of the level of pain that they’re in. Amazing and unique ideas are being bounced off of people all the time.
No one likes being sick.
(Oh, just a side note. For all of the doctors who said that if I lost weight everything would get better. Three years ago I lost about 40 pounds through a medically weight loss program. I lost it fairly quickly. I didn't have any change in my symptoms. Some of them got worse. I kept the weight of for about six months. I did gain it back, plus a bit more (stress eating). Over the last year I've lost 60 pounds. I lost about 35 pounds very quickly, it's never really been determined why I lost those first pounds. Since I'm overweight, the doctors, regardless of how good they are, seem not to hear it when I tell them that I'm not DOING anything - I've lost my appetite and/or I'm eating normally and have lost the weight in a short time. Since I wasn't hungry, I figured I might as well eat well so I've changed what I eat and how much I eat and I've lost the rest of the weight slowly since then. I still have a way to go. Since I've lost the 60 pounds.....no change in anything medical. Weight really isn't the answer to every medical condition.)
