Hello. I am new to this forum. I was diagnosed with fibromyalgia about 5 years ago although I now realise that I've had this for much longer. I had a nerve stimulator implanted in 2016 which has really been helpful and reduced the pain in my lower body by about 85%. I still have upper body pain but this is usually tolerable.
A couple of years ago I started to have numerous debilitating symptoms associated with dysfunction of the autonomic nervous system. These became so severe that I had to give up my full time work and I spent days/weeks at a time where I could hardly move out of bed. The GP I had at the time didn't seem to understand what was happening and tried to refer me to a psychologist to stop my tremor. I could barely stand up let alone visit a psychologist.
I have relocated and the new GP is not much better. Nice bloke but seems to have little understanding of fibromyalgia and seems confused that I'm not seeking pain medications. While the ANS symptoms have now improved, I was so ill for so long that I am worried that if I become ill again I won't be able to find help.
Does anyone else have this experience? Should I find a new GP? I'm not expecting a miracle cure but at least some level of understanding would be helpful.
Have you seen a neurologist re your condition or has the doctor thought of referring you to a specialist to help you out .
You could also print off the letter for those who suffer chronic pain and let your doctor read it ,I would recommend you stipulate that you sit there whilst they read it sometimes it can sink in ,we have a lot of very knowledgeable people on the forum who may have some more ideas to put to your gp .
as long as I wake up alive I'm happy
Because it could be worse
Hello Johnno. Thanks for your response. Yes. I've seen a few specialists who have confirmed I have fibromyalgia and possibly chronic fatigue but aside from confirming the diagnosis they have been of little assistance. I think with fibro it's a case of you're on your own. Actually the rheumatologist who diagnosed the fibro told me that within 6 months I would know more about fibro than he did. SusanW
Hi Johnno. A debt of gratitude is in order for your reaction. Truly. I've seen a couple of pros who have affirmed I have fibromyalgia and conceivably unending weakness yet beside affirming the determination they have been of little help. I think with fibro it's an instance of you're without anyone else. As a matter of fact the rheumatologist who analyzed the fibro revealed to me that inside a half year I would find out about fibro than he. SusanW
Sadly, that's often the case. Sufferers of chronic pain, or other debilitating conditions tend to want to know what they are going through, so are more likely to study up on it, or ask around.
Same thing applies to medications.
I've had a doctor tell me point blank that he'd never heard of a particular side effect of medication, and he did it with a condescending manner.
I knew from personal experience, and also reading up on different forums to find out whether what I was experiencing was unusual, and I also happened to find information about it on the pharmaceutical company's own website.
That's not to say that doctors and specialists don't know what they are talking about, just that when you're experiencing something on a daily basis, you're actually living it.