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Posts (33)

4 days ago · Frankincense and Myrrh for Neuropathy pain in Neuropathy

Hello @hotfooted . Yes, I have been following your posts – I am very thankful you are sharing your results and specific types of pain you feel in your feet and legs. It matches what I go thru with my hands, forearms and feet. I get freezing cold spells on my hands to where I need to wear gloves or even cover them with thick socks. Same with my feet – however, my feet are not as bad as my hands and forearms. It makes it difficult to type for me, due to all the different sensations. I have not purchased the F&M yet, but I will be soon. I have been using a CBD infused pain stick (THC free) the past two weeks. Best wishes for less pain and thanks again for your informative posts!

Fri, May 10 12:39pm · Frankincense and Myrrh for Neuropathy pain in Neuropathy

Thank you so much for sharing your story. I have severe SFN and Autonomic Dysfunction – lots of nerve pain throughout my body. I experience all that you have described, in both of my hands and up to my elbows. I am going to purchase some Frankincense and Myhhr drops, to see if it will help my hands and forearms. I will let you know my experience with the drops combined with lotion. Fingers crossed, it will help! I am so very happy to hear you have found relief. Very nice to hear. May you continue to get daily and nightly relief!

Mon, Feb 25 2:44pm · gabapentin and muscle pain in Chronic Pain

Hi @anniebrook . I take Cymbalta at night – 60mgs. I have been taking it for about 4 years now and noticed that it did help with my nerve pain.

*Gabapentin agrees with me and I have been taking it for 9 years. I was titrated up over the years and now take 800mgs, 4 times a day.*

Best wishes for less pain,

TeeTee

Mon, Feb 25 2:35pm · Its just been two weeks, could this be Small fiber neuropathy? in Neuropathy

Thank you @elained . I apologize for missing your reply.

I've been having a very rough 3 weeks with my Autonomic Dysfunction, severe SFN, chronic pain and as you know (unfortunately) the list just goes on and on.

The Weather – has really riled things up – first time I have noticed the weather affecting my Autonomic Dysfunction. It definitely plays a huge role.

My Thermoregulatory System – is VERY out of whack. I have been having terrible bouts of sweating now 24/7. I have been trying to get in to see my Neurologist, but I have felt too sick.

My Neurologist started me on Midodrine and Fludocortizone for my Orthostatic Hypotension and it does help, but I still get syncope episodes every day. I haven't fallen recently, thank goodness, but have come very close. It scares me because I have 4 compression fractures (T5, T6, T7, T8) which all have over 50% loss of height and my discs in-between are all dehydrated. (My Neurosurgeon will not operate on them due to how high risk the surgery is and the success rate isn't good at all).

My skin – on both hands have red blotches on all my fingers and on the top of both. I have a lot of numbness, tingling, nerve pain in them. Both arms have nerve pain but lately it's been mostly deep muscle and joint pain.

My bladder is having more spasms and tenderness. I am nauseous a lot. I literally could lay here and type for an hour on all that's going on, lol. It's crazy!

I have decided to go ahead with getting my first Ketamine infusion. It has been recommended for a while by my pain management doctor and my Neurologist gave me the go-ahead on trying these infusions. I have been using Ketamine nasal spray for 2 years now (it has to be compounded at an apothecary) and it does help to take the edge off migraines sometimes and nerve pain. It's been hard to find people who have undergone Ketamine infusions for chronic pain.

If anyone has any experience or knowledge with Ketamine infusions, I would love to hear about their outcomes with them. When I was undergoing the plethora of Autonomic tests at the Mayo last year, the doctors here were very enthusiastic about Ketamine infusions.

Best wishes to you and everyone. It's one day at a time and one step at a time.

TeeTee

Fri, Feb 22 5:10pm · Small Fiber Neuropathy in Neuropathy

Yes, that makes sense about feeling "deeper".

I used to go back and forth in my mind thinking, "Well, I am glad I don't have diabetes or some other disease that is causing all of this…but, where do we go from here"?

You will read through other posts on here about what has worked for others, to help with their SFN pain.

I really do hope you can find extra relief. I am always looking, too.

TeeTee

Fri, Feb 22 4:45pm · Small Fiber Neuropathy in Neuropathy

I am glad the Lyrica is helping a little bit. Were you suffering with this for a while, prior to your diagnosis? Have you had any injuries, or did this just start happening out of nowhere?

Fri, Feb 22 4:37pm · Small Fiber Neuropathy in Neuropathy

Oh boy, yes. What you have described is what I feel mostly in both hands and both forearms. I also have it in the same areas as you, but my hands and forearms are the worst with the SFN.

You definitely are not alone. And, yes, I wouldn't want anyone else to suffer with SFN.

Were you diagnosed via punch biopsies? Do you see a Neurologist? What are you doing for your pain? At first, topical ointments and lidoderm patches helped, in addition to Gabapentin. (I am so thankful Gabapentin agrees with me – I can't imagine life without it. It helps to take the edge off).

Fri, Feb 22 4:22pm · Idiopathic Small Fiber Neuropathy in Neuropathy

Hi again, @jasont I forgot to ask how you were diagnosed. Was it via punch biopsies? What other tests have you had?