I have Fibromyalgia and I am extremely lucky. I am extremely lucky because, although I do have Fibromyalgia, I do not suffer excruciating pain unlike so many others who have Fibromyalgia. However, I am not completely lucky: after all, I do have Fibromyalgia. In the main, I am afflicted by tiredness, exhaustion and fatigue; “Fibro fingers” (when I am unable to feel my fingers properly and it is difficult to use them effectively); wildly fluctuating body temperature; extremely cold hands and feet; dizziness and Fibro fog. I must admit that having cold hands and feet is something of a revelation as, in the past, my feet seldom felt cold. Now, however, it’s a very different story. The cold in my extremities makes having a shower difficult and uncomfortable: my hands and feet are burned by the water and yet, when the water hits my body it is barely more than tepid.
I admit that recently most of my symptoms have been barely present, apart from the dratted cold hands and feet. I had been thinking that the lack of symptoms was due to adrenalin coursing through my body because of the stresses that have been around me recently. However, I’m not so sure now.
When I returned from Australia at the end of last week I was pretty much symptom-free. Yes, I was suffering nausea and sickness plus the ever-present foul taste in my mouth, but I was sure all of that was due to side effects of the Amitriptyline. I decided to reduce the dose from the 60mg I had been taking whilst in Australia, to 50mg per day. I hoped that the small reduction would halt the side effects. I was unsure whether that would be the case as originally the nausea had begun when I was taking 70mg but had reappeared when I was on 60mg, but I didn’t want to prejudge.
I duly reduced the dose last Friday. Unfortunately the nausea and other side effects continued so, after five days, I dropped again, to 40mg. Still the side effects have remained.
I had a telephone consultation with Dr. Azeer yesterday during which I told him about the side effects I was having and that I was struggling to eat because of them. I also told him that I was now taking 40mg. We agreed that I need to come off the Amitriptyline entirely and went on to discuss the remaining treatment options. He again mentioned that Pregbalin was really the only drug choice we had. At that point, I asked him whether its efficacy mainly worked for pain or tiredness. He replied that it works mainly on pain. Hmm. So this was where the balancing trick came into play. I had a choice to make:
1. Take Amitriptyline and feel almost constantly nauseous, suffer frequent vomiting and not be able to eat a reasonable diet;
2. Take Pregbalin and have my body become used to it, even before I have severe pain; or,
3. Don’t take any drugs for the Fibromyalgia.
Dr. Azeer and I had a good discussion during which I expressed the fear that if I start taking Pregbalin now, when I have little pain, it may not be effective if or when I suffer the levels of pain that many people with Fibromyalgia have. We agreed that I would not take any drug for the Fibromyalgia, for the time being, and that the decision can be reviewed whenever I feel the need.
Having heard what other Fibro sufferers have to cope with because of their doctors, I appreciate just how fortunate I am to have such an approachable, understanding and empowering GP as Dr. Azeer. I may have drawn the short straw in some things, but I am so lucky in who my GP is.