Alouqua47
Peer Supporter
Hi everyone. I just wanted to share a bit of my experience and, honestly, also to vent.
I’ve been in this forum for a little over a month, but I’ve been dealing with my symptoms for about seven months now. From the very beginning, they were neuropathic, with normal tests and very changeable, which was extremely frightening. I worried about serious illnesses, even though I never had any loss of strength. Still, the fact that everything moved and changed so much was terrifying.
I’ve seen a few people here with somewhat similar cases, though they seem to be in the minority. In my case, everything is neuropathic and widespread. It’s not localized or occasional—it’s there all the time. I have bilateral burning sensations in my calves that can be mild one day and stronger the next, sometimes with an electrical quality. In my arms, I experience moving electrical sensations, along with sensations in my fingers, constantly shifting and very uncomfortable.
Lately, a third type of symptom has appeared. Before, I would occasionally feel isolated sensations, but now I notice mild nerve-like or electrical sensations in different parts of my body—my face, head, neck, ear, back… even when walking or applying slight pressure. This didn’t happen before, and it feels like my system is much more active, which is very frustrating.
Sometimes I think about genetics. My father doesn’t have fibromyalgia or anything generalized like what I experience, but he does have an SMT-type symptom: burning in his feet when he lies down at night. He has always been a very anxious person, and I wonder if that influenced my nervous system. In my case, the burden feels much more widespread and constant.
I also feel that my arms have a particular history. The symptoms in my arms began during panic attacks. During one of those episodes, I felt a cold line behind my elbows, and from there the sensations started to settle in and spread. At that time, the symptoms could intensify within seconds during panic. Because of this, I feel my brain may have linked using my arms with danger. I haven’t had panic attacks for over two months now, but I still struggle to understand how my brain is supposed to relearn that my arms are safe.
At the beginning, there was a period when I felt somewhat better. The sensations in my legs were so mild that I could ignore them, and the sensations in my arms felt different—more tolerable. I don’t know if I had more good days or if the quality of the symptoms was simply different. Now everything changes more often, both in form and intensity.
I’ve read about neuroplasticity and understand, in theory, that the brain can unlearn these circuits. I know that staying calm and not reacting to symptoms as a threat is part of the process. But when symptoms are so constant and so changeable, it can be hard to trust that. Everyone improves at their own pace, and while some people recover quickly, others of us seem to have more complex situations.
Right now, I’m just trying to live my life as best I can, even though it isn’t easy. I’m not writing this looking for a perfect answer—just to share what I’m going through and hopefully connect with others who might understand this experience.
I’ve been in this forum for a little over a month, but I’ve been dealing with my symptoms for about seven months now. From the very beginning, they were neuropathic, with normal tests and very changeable, which was extremely frightening. I worried about serious illnesses, even though I never had any loss of strength. Still, the fact that everything moved and changed so much was terrifying.
I’ve seen a few people here with somewhat similar cases, though they seem to be in the minority. In my case, everything is neuropathic and widespread. It’s not localized or occasional—it’s there all the time. I have bilateral burning sensations in my calves that can be mild one day and stronger the next, sometimes with an electrical quality. In my arms, I experience moving electrical sensations, along with sensations in my fingers, constantly shifting and very uncomfortable.
Lately, a third type of symptom has appeared. Before, I would occasionally feel isolated sensations, but now I notice mild nerve-like or electrical sensations in different parts of my body—my face, head, neck, ear, back… even when walking or applying slight pressure. This didn’t happen before, and it feels like my system is much more active, which is very frustrating.
Sometimes I think about genetics. My father doesn’t have fibromyalgia or anything generalized like what I experience, but he does have an SMT-type symptom: burning in his feet when he lies down at night. He has always been a very anxious person, and I wonder if that influenced my nervous system. In my case, the burden feels much more widespread and constant.
I also feel that my arms have a particular history. The symptoms in my arms began during panic attacks. During one of those episodes, I felt a cold line behind my elbows, and from there the sensations started to settle in and spread. At that time, the symptoms could intensify within seconds during panic. Because of this, I feel my brain may have linked using my arms with danger. I haven’t had panic attacks for over two months now, but I still struggle to understand how my brain is supposed to relearn that my arms are safe.
At the beginning, there was a period when I felt somewhat better. The sensations in my legs were so mild that I could ignore them, and the sensations in my arms felt different—more tolerable. I don’t know if I had more good days or if the quality of the symptoms was simply different. Now everything changes more often, both in form and intensity.
I’ve read about neuroplasticity and understand, in theory, that the brain can unlearn these circuits. I know that staying calm and not reacting to symptoms as a threat is part of the process. But when symptoms are so constant and so changeable, it can be hard to trust that. Everyone improves at their own pace, and while some people recover quickly, others of us seem to have more complex situations.
Right now, I’m just trying to live my life as best I can, even though it isn’t easy. I’m not writing this looking for a perfect answer—just to share what I’m going through and hopefully connect with others who might understand this experience.