I have had many of these neuropathy symptoms for 2.5 years. I finally go Wednesday at Tampa FL USF campus for a Snf Skin biopsy. All other tests I have had have not yeilded any diagnosis.
I started medical marijuana about eight months ago and it does relieve a lot of the symptoms but does not relieve them completely. These over the counter cbd stores and their products did NOT work for me at all and that's why I took the next step and went to a state licensed medical marijuana doctor for my medical marijuana card.
I can not understand why so many doctors have no idea what so ever on why these neurological symptoms started etc. All these doctors do is blame anxiety and want to quickly send you out the door with a Rx for anti depressant medication. I'm fed up.
AND All of my doctors that I have seen from neurologist to endocrinologist to cardiologist to primary care doctors to emergency room doctors etc all of them will refuse to even think about the covid virus or other types of viruses starting this avalanche of neurological problems that affect me at least from head to toe. My symptoms affect my extremities my muscles my blood pressure my poles my vision my heart rate my bowels and also my sensory perception with what I can explain as sensory overload where I feel like I have adrenaline rushes through my body like a tidal wave yet all the blood work up for my adrenal glands or my thyroid or my metanephrines or metanephrine free blood tests all come back normal YET I feel awful.
I have been continually sending my neurologist and my cardiologist and my primary care doctor studies done over the last year that directly link long haulers and the covid virus to many of these autonomic nervous system problems under the dysautonomia umbrella. More doctors need to start focusing at least in some part that some of their patients have developed these debilitating neurological symptoms from the covid virus. I just cannot understand why so many specialist in America, and we are supposed to be the most medically advanced country, that they are so far behind on these neurological symptoms and have really no clue at all what to do or how to treat you except for to give you a prescription for antidepressants and blame everything on anxiety and stress. I'm so sick of it
My first disappointment was with a Neurologist. My first three foot Doctors could not help. I found one that has knowledge bout PN, hurrah! With PN affecting so many parts of the body, you would think the "specialists" that we have so many of, would have some knowledge of PN or at least refer you to someone who who could help. My hand Doctor was the one who diagnosed me before my hands were involved! BTW, I use CBD from the Dispensary, and had to try MANY types and formulas to find the one that worked best. Also, for me, Hemp CBD is not as pain relieving! Exercise helps as well. Best wishes!
I am waiting for treatment for SFN as well. Each year I have something new. Each year I am in more pain. First was numbness so bad it turned to pain. Then, among bodily pain I had a period of mouth sores. I had a low grade fever for approximately 18 months. (99 degrees to 101.6 degrees). My legs got "heavier" and weaker each day. I went to physical therapy for several months that helped a little. I am allowed to have steroid infusions, but they don't seem to be helping anymore as well. I am on pain medication, but breakthrough pain in abdomen and right flank are excruciating. As I type this now, I have had a migraine, and all it's symptoms or nine days. I also have rib cage pain that will not end. My doctor tried to get me into IVIG therapy, but insurance does not like
SFN diagnosis and will not cover. Weeks like these, I struggle to get out of bed and just have a life.
I am waiting for treatment for SFN as well. Each year I have something new. Each year I am in more pain. First was numbness so bad it turned to pain. Then, among bodily pain I had a period of mouth sores. I had a low grade fever for approximately 18 months. (99 degrees to 101.6 degrees). My legs got "heavier" and weaker each day. I went to physical therapy for several months that helped a little. I am allowed to have steroid infusions, but they don't seem to be helping anymore as well. I am on pain medication, but breakthrough pain in abdomen and right flank are excruciating. As I type this now, I have had a migraine, and all it's symptoms or nine days. I also have rib cage pain that will not end. My doctor tried to get me into IVIG therapy, but insurance does not like
SFN diagnosis and will not cover. Weeks like these, I struggle to get out of bed and just have a life.
Hi @trudi22, Welcome to Connect. I'm sorry to hear that your IVIG therapy was not allowed by your insurance for your diagnosis of SFN. It doesn't sound like IVIG infusions will help much with the pain for SFN according to this 2021 article -- Intravenous Immunoglobulin Therapy in Patients With Painful Idiopathic Small Fiber Neuropathy: https://n.neurology.org/content/96/20/e2534
The Foundation for Peripheral Neuropathy also has some different treatments listed here including some over the counter items that may provide some relief - https://www.foundationforpn.org/treatments/.
Duloxetine is also called Cymbalta. It is a prescription medication. It helps calm my anxiety which causes significant pain. And then the pain creates more anxiety.
Good luck.
Chris
Welcome @steveny9, I think you have asked the question that so many of us have asked. I'm not sure there is an answer. Mine started in my late 40's and I only have the numbness with a little tingling but no pain. There is another discussion on the topic you might want to read through --- Neuropathy: Numbness only, no pain: https://connect.mayoclinic.org/discussion/neuropathy-numbness-only-no-pain/
I didn't bother with a diagnosis for well over 20 years after my primary care doctor told me there was no fix for the problem. Have you been diagnosed with neuropathy or do you just have the symptoms?
Hi @johnbishop I was diagnosed by a second doctor more than 16 years ago. (The first doctor did some really painful electrical shots to my feet and legs. He could not diagnose it.) The second doctor told me usually it takes several doctors to finally diagnose a patient. He said I had small fiber neuropathy and there was no cure. The neuropathy started small in both feet. Over time it progressively spread to the entire feet. Now it is spread to the ankle. 11 days ago I stopped statins after I did some research (again!) on neuropathy. Apparently, the brand I was on can cause neuropathy. I have been off statins for 11 days now. I have noticed less tingling in my legs. I really believe the statins were a side effect that added to the problem. I was diagnosed by a second doctor more than 16 years ago. (The first doctor did some really painful electrical shots to my feet and legs. He could not diagnose it.) The second doctor told me usually it takes several doctors to finally diagnose a patient. He said I had small fiber neuropathy and there was no cure. The neuropathy started small in both feet. Over time it progressively spread to the entire feet. How it is spread to the ankle. 11 days ago I stopped statins after I did some research (again!) on neuropathy. Apparently, the brand I was on can cause neuropathy. I have been off statins for 11 days now. I have noticed less tingling in my legs. I really believe the statins were a side effect that added to the problem.
It sounds like we have VERY similar problems except mine affects both hands, I can no longer touch type, button my shirts (use button hook) and have difficulty turning pages of a newspaper or magazine. I can shuffle around the house with no cane but I can not stand still without touching something (wall or furniture), outside the house I use either a cane or walking stick. I am 85 now so just waiting to see what happens next.
Yes, my quality of life has diminished as I can no longer play sports or travel like I used to. My wife and I used to spend our summers in Maine ( I still have a sister age 97 who lives in Maine) and we used to go on two or more cruises every year (Caribbean, Europe, Alaska, Hawaii, South Pacific, Central America, ***). I am 85 now and still get around town with a cane so enjoy what you like to do while you still can.
Thanks, but for starters this article was in 2002. Second, in the first paragraph "There is no treatment to reverse the neurologic deficit of this disease manifestation....." I've tried several light therapies. All have failed. At this point I'm just looking to decrease the daily pain, even partially. When the pain flares up during the day, what do I do??? Neuropathy Meds don't work. Pain meds don't work. Until the nerve pain calms down by itself, I am not a happy camper. To me it's all about the PAIN. What to do when the nerve pain flares up.
Connect
Connect
Like
Helpful
Hug
My first disappointment was with a Neurologist. My first three foot Doctors could not help. I found one that has knowledge bout PN, hurrah! With PN affecting so many parts of the body, you would think the "specialists" that we have so many of, would have some knowledge of PN or at least refer you to someone who who could help. My hand Doctor was the one who diagnosed me before my hands were involved! BTW, I use CBD from the Dispensary, and had to try MANY types and formulas to find the one that worked best. Also, for me, Hemp CBD is not as pain relieving! Exercise helps as well. Best wishes!
I am waiting for treatment for SFN as well. Each year I have something new. Each year I am in more pain. First was numbness so bad it turned to pain. Then, among bodily pain I had a period of mouth sores. I had a low grade fever for approximately 18 months. (99 degrees to 101.6 degrees). My legs got "heavier" and weaker each day. I went to physical therapy for several months that helped a little. I am allowed to have steroid infusions, but they don't seem to be helping anymore as well. I am on pain medication, but breakthrough pain in abdomen and right flank are excruciating. As I type this now, I have had a migraine, and all it's symptoms or nine days. I also have rib cage pain that will not end. My doctor tried to get me into IVIG therapy, but insurance does not like
SFN diagnosis and will not cover. Weeks like these, I struggle to get out of bed and just have a life.
Hi @trudi22, Welcome to Connect. I'm sorry to hear that your IVIG therapy was not allowed by your insurance for your diagnosis of SFN. It doesn't sound like IVIG infusions will help much with the pain for SFN according to this 2021 article -- Intravenous Immunoglobulin Therapy in Patients With Painful Idiopathic Small Fiber Neuropathy: https://n.neurology.org/content/96/20/e2534
You might find reading through the following discussion helpful - Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/
The Foundation for Peripheral Neuropathy also has some different treatments listed here including some over the counter items that may provide some relief - https://www.foundationforpn.org/treatments/.
Also, if your doctor thinks the IVIG will help here are some tips you might find helpful to get the treatment -- Tips for When Your Medical Insurance Company Will Not Pay: https://www.verywellhealth.com/health-insurance-company-wont-pay-3231743
Have you contacted your insurance company directly or did they just tell the doctor it's not covered?
-
Like -
Helpful -
Hug
4 ReactionsDuloxetine is also called Cymbalta. It is a prescription medication. It helps calm my anxiety which causes significant pain. And then the pain creates more anxiety.
Good luck.
Chris
-
Like -
Helpful -
Hug
2 ReactionsHi @johnbishop I was diagnosed by a second doctor more than 16 years ago. (The first doctor did some really painful electrical shots to my feet and legs. He could not diagnose it.) The second doctor told me usually it takes several doctors to finally diagnose a patient. He said I had small fiber neuropathy and there was no cure. The neuropathy started small in both feet. Over time it progressively spread to the entire feet. Now it is spread to the ankle. 11 days ago I stopped statins after I did some research (again!) on neuropathy. Apparently, the brand I was on can cause neuropathy. I have been off statins for 11 days now. I have noticed less tingling in my legs. I really believe the statins were a side effect that added to the problem. I was diagnosed by a second doctor more than 16 years ago. (The first doctor did some really painful electrical shots to my feet and legs. He could not diagnose it.) The second doctor told me usually it takes several doctors to finally diagnose a patient. He said I had small fiber neuropathy and there was no cure. The neuropathy started small in both feet. Over time it progressively spread to the entire feet. How it is spread to the ankle. 11 days ago I stopped statins after I did some research (again!) on neuropathy. Apparently, the brand I was on can cause neuropathy. I have been off statins for 11 days now. I have noticed less tingling in my legs. I really believe the statins were a side effect that added to the problem.
-
Like -
Helpful -
Hug
1 ReactionDo you feel with all these limitation your quality of life has been diminished?
I am 65 and I am worried I may end up in a wheel chair.
Yes, my quality of life has diminished as I can no longer play sports or travel like I used to. My wife and I used to spend our summers in Maine ( I still have a sister age 97 who lives in Maine) and we used to go on two or more cruises every year (Caribbean, Europe, Alaska, Hawaii, South Pacific, Central America, ***). I am 85 now and still get around town with a cane so enjoy what you like to do while you still can.
-
Like -
Helpful -
Hug
2 ReactionsI agree....what can we do to decrease the PAIN?????
Madge
It’s prescription
From your psychiatrist