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Frustrated, The symptoms with cold and hot weather do seem to be consistent with people who have SFN. I get hot flashes something fierce throughout my body. In fact, my ears are burning and beat read as I type this email. I have people comment on it sometimes and I just tell them, "I got a lot of sun." The symptom comes and go and to answer your question, yes, I think it is a result of the SFN. Good times!

The punch biopsy is actually a very new development. I think it was discovered roughly 5 years ago. At least that's what my neurologist told me. He also expressed they make new break through in their field of medicine all the time so it's important for patients to meet with their neurologist at least once a year. You never know how new medicine could help us. Stem-cell research is the key in my opinion. If they can figure out a way to regrow and/or repair the small fiber nerves through stem cell research, there may be a potential cure out there for people like us! Fingers crossed...

Regarding work, that is a great question. Before I was diagnosed with SFN I couldn't find a doctor to treat my symptoms. I suffered with the pain day in and day out. I too found it extremely hard to concentrate for long periods of time. I don't know about you, but sitting behind a desk for an extended period of time just drove my symptoms crazy. The burning, pins and needles, back pain, etc. was just agonizing. As you stated, the pain was at the forefront of my mind and I could not shake it, EVER! I was depressed because of my pain, and when you mix that with all the other symptoms, it made it close to impossible to focus at work. I can empathize with you so much on this subject. I'm a people manager and I just can't express enough how hard it was for me, so I know exactly where you're coming from. I had been dealing with the pain for years. The onset of the symptoms started when I was 18 and it took until I was 31 to finally get diagnosed. At around age 27 I started to self-medicate to get through the day, because I couldn't find a doctor to prescribe me medicine without a diagnosis. I would take any type of pain med I could get my hands on. I know this was the complete wrong thing to do, but I was desperate for relief so I did what I felt was necessary to reduce the pain and keep my sanity.

Ever since I was officially diagnosis with SFN I have found a wonderful team of doctors that treat my symptoms by using a few different medications. The med's help me work and live my life in less pain. Not pain free, but in less pain, which I'm satisfied with. If I didn't have the meds, I would be miserable. I've come to rely on them, which I'm ok with because there is no underlying cause or cure for my disease. I'm able to be productive at work. But more importantly I'm able to be a good husband, friend, son, and person because of the pain relief the meds give me.

The problem with SFN is there isn't any noticeable symptoms just by looking at a person who has the disease. As a result people look at us and say, "Well you don't look like you're in pain. You don't look like you have a disease. You look ok to me." But inside your body is painting a completely different picture. My heart goes out to all the people who have this disease, who suffer from chronic pain, who have no support, and who are just looking for answers and relief from this shitty disease. There is a great book I just finished reading that focus' on the subject of chronic pain and a person's appearance. I read the book and saw SO MUCH of myself and other people I've spoken with about this disease. I strongly encourage Frustrated and anyone else to please read this book. It's called Just Fine: Unmasking Concealed Chronic Illness And Pain by Carol Sveilich. This should be required reading for any doctor/person who treats or had chronic pain.

Frustrated: Couple questions for you? 1) Are you treating your pain with any type of meds right now? Are you open to taking pain meds? If you are, they really help once your body get's used to them. For me, they are the only thing that has helped relive my pain. 3) Are there any Pain Management Doctors/Practices in your area? In my search for help, I found "pain management" doctors are more apt to helping people with chronic pain, and treating symptoms without a diagnosis. I feel for and empathize with you so much. If you're interested in seeing the letter I wrote or you just have more questions regarding what I've been through with SFN please let me know. I'm happy to share any information and help anyone I can with my story. As you can tell from how much I write I'm very passionate about this subject. I suffered for so long without help or medicine from doctors, and I just don't want to see that happen to other people. You can ask away on the public forum or send me a private message. Whatever works for you!

Regards:

JJM





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