Hi Allie. Glad to hear you are still doing well and also glad that you have posted for Tina and others to benefit from your experience. Maybe the Trileptal will help Tina with the cramps she is suffering. I remember in the dark days when I was being diagnosed with SFN, your postings and ability to lead a normal life with minimal pain gave me hope. Now I am also leading a normal life with minimal pain, and I hope both of our cases give Tina and others hope that at least some of us SFN sufferers can find the right med combinations that work for us. Savella must be the new kid on the block as far as meds go. Please do post how it works for you.
Tina, one point Allie made that may not have been real clear is that after maxing out a drug, like Lyrica, a person can go off it and then later return to the same drug and it willl again have the good effect it had initially. I didn't understand this principal for a long time and was afraid, like you expressed, of what would happen when the highest dosage of a drug no longer worked. Learning this has lessened my worry.
Hi Allie. Glad to hear you are still doing well and also glad that you have posted for Tina and others to benefit from your experience. Maybe the Trileptal will help Tina with the cramps she is suffering. I remember in the dark days when I was being diagnosed with SFN, your postings and ability to lead a normal life with minimal pain gave me hope. Now I am also leading a normal life with minimal pain, and I hope both of our cases give Tina and others hope that at least some of us SFN sufferers can find the right med combinations that work for us. Savella must be the new kid on the block as far as meds go. Please do post how it works for you.
Tina, one point Allie made that may not have been real clear is that after maxing out a drug, like Lyrica, a person can go off it and then later return to the same drug and it willl again have the good effect it had initially. I didn't understand this principal for a long time and was afraid, like you expressed, of what would happen when the highest dosage of a drug no longer worked. Learning this has lessened my worry.
Best to all, Ruby
I believe that my doctor is trying that switching back to Lyrica after using Gabapentin(Neurontin) for months. I'm still on the low dose profile of 900 mg Gabapentin and/or 150 mg Lyrica daily, I hope I don't have to take more...
I got used to Lyrica after a few weeks(side effects) and my first pill got me the dizzies again and little pain relief... I believe this is "normal" because of it's mechanism, and because I'm switching meds, but how awful is this feeling to be in square one again after you thought you were progressing.
Tina: I don't know how your sugar levels normally are, but I've never passed the 100's mark. I tell you this because that is a borderline measure, and many borderliners, which are some times over 100 and sometimes below, do develop diabetic neuropathy.
I'd suggest that you keep on watching those levels, and why don't you try, if it's ok with you and your doctors Alpha Lipoic Acid, which is great for this, specially if the borderline stuff is messing with you. It will protect your nerves and lower your sugar levels too.
On exhaustion, given your hear issues this could be a double trouble, but I'm exhausted without heart arrhythmia so...
And finally about what you mention about muscle wasting, one doctor out of 5 told me I got some, I got obsessed for every hole in the skin, thinning of a muscle and such, but I really can't tell for sure.
I think that, unless is really evident this has to be defined by an expert, because with age we got some muscle waste, inactivity due to pain in SFN is another cause, because technically speaking again, SFN doesn't affect motor nerves, so it can't produce muscle issues. In my case where I have muscle twitching and measured clinical weakness(found through an EMG) I get to have the "best" of both worlds. Even as I'm supposedly improving in that matter, again confirmed by an NCV test, I feel worse....
After two great days I'm on pain again today... sigh. I'll post the story after I talk with my doctors because I want to ask several questions to see if I can get something useful from that.
Best to all.
Anyway
Still no underlying cause(like most of us), don't knwow my triggers, today one thumb hurts tomorrow one toe, it's a neverending story.
Im with you.ive had smn since 1998 mainly in my hands and feet.i had to stop driving an eithteen wheeler in fed this year.i started getting panic attacks while driving.sfn and driving dont mix very well.elavil helps me sleep well.but day time sucks.i take tramadol and neurontin for day time pain.they take the edge off a little.doc is helping me get ssi.sfn spread to leggs and arms very fast.and going into my face and back.i am so happy to have a nurse as my wife.she is my angel.good luck to you
Im with you.ive had smn since 1998 mainly in my hands and feet.i had to stop driving an eithteen wheeler in fed this year.i started getting panic attacks while driving.sfn and driving dont mix very well.elavil helps me sleep well.but day time sucks.i take tramadol and neurontin for day time pain.they take the edge off a little.doc is helping me get ssi.sfn spread to leggs and arms very fast.and going into my face and back.i am so happy to have a nurse as my wife.she is my angel.good luck to you
As you may read from my post I don't have, officially at least, SFN, but got all the symptoms. A skin Biopsy or the sweating test are not available for me to confirm or discard this diagnosis.
Nevertheless I do have SFN symptoms, but on top of that I also have motor symptoms, weakness, muscle twitching, muscle ache, which were confirmed in a EMG/NCV I got back in February.
I don't know if "pure" SFN sufferers have motor issues, and viceversa, because according to medical articles you're not suppose to, you have one or the other.
Anyway in both cases, anxiety alone(with the panic attacks) can be as disabling, if not more than the neuropathy itself, because it not only raise your symptoms, but gives you new ones, up to the point that in my last neurologist appointment, they believed that my case was pure anxiety....
I did show improvement on a new NCV test, but I don't feel so well...
It's great that you have someone who can give you the hugs and attention needed when sometimes the average people sees you and tells you. "you look fine", evne as you're in terrible pain and/or fear.
My feet and hands started burning back in 1998.sugar levels aways fine.i guess i should have went to a neuo back then maybe they could of helped me more.i hate taking meds my wife wont let me drive the car because i have a panic attack most everytime i drove.yes i know its not safe for me to drive.but i sure miss it.just the little things like that realy gets me down.i miss driving a big rig.dont know way.anyway thanks.i guess we just need to let out how we feel.you guys are great
Ive not tried that yet.ill get some tomorrow.my wife is a nurse she also said that may help.ill let you know if it does.thank you so much.my name is paul by the way
I wouldn't take Savella if I were you!! I've just checked it out on on their site and in the RELATED ARTICLES list on the right of the page. They are trying to get it taken off the market! It hasn't been approved for use here in Europe.
All the best
I did take savella you take it as a steping stone in dosage and i started having pain in the stomach and rectum then i could not pee just drops i got a endo and colonoscapy and when they both came out ok my uroligist had given me something to help pee then i started putting 2 and 2 together on time frame and it was a side effect of savella. I do have to say though to bad on the side effect because it was helping my hands and feet pain.
AbI too suffer from SFN in my feet. I was initially recommended amitriptaline which I strongly refused due to all the horror stories I have heard from people I know who had been onstill on them . Gabapentin was offered as an alternative & and after researching them on internet I decided to take them. Gabstention works for me but the dosage needed to be increased gradually over two weeks from 3 x 100 mg / day to 3 x 300mg / day .this seemed ok for a few months but my SFN sgarter to get steadily worse , so my dosage to what I am on now which is 3x300mg capsules 3x a day.ie from basically 300mg/day to 2700mg/day. This dosage is at present ok but ive only been on this since July 2011-present. I have read that the maximum dosage allowed in UK is 3600mg/day. Recently ive noticed that I have hada few violent episodes and it is being related to the gabapentin . What I am wondering is if anyone else has noticed this and if any one can recommend an alternative drug which I can mention to my doctor . Thank you jx
I had also tried Gabapentin and i did not do so well on it alot of side effects.I was on Trileptal went off it to go on a natural but i believe it is not doing all it can any more and this morning i went back to my neuromusclar doctor and told her it is not doing as well as it use to at first she wanted to put me on Gabapentin and i asked for the Trileptal and she had no problem with going back thought it was in the same league or better.
AbI too suffer from SFN in my feet. I was initially recommended amitriptaline which I strongly refused due to all the horror stories I have heard from people I know who had been onstill on them . Gabapentin was offered as an alternative & and after researching them on internet I decided to take them. Gabstention works for me but the dosage needed to be increased gradually over two weeks from 3 x 100 mg / day to 3 x 300mg / day .this seemed ok for a few months but my SFN sgarter to get steadily worse , so my dosage to what I am on now which is 3x300mg capsules 3x a day.ie from basically 300mg/day to 2700mg/day. This dosage is at present ok but ive only been on this since July 2011-present. I have read that the maximum dosage allowed in UK is 3600mg/day. Recently ive noticed that I have hada few violent episodes and it is being related to the gabapentin . What I am wondering is if anyone else has noticed this and if any one can recommend an alternative drug which I can mention to my doctor . Thank you jx
I've had PN since around 07...I was on Lyricia but for Insurance reasons had to switch to Neurontin and have been on it for about 2+yrs...a few months ago my Insurance switched and was allowed back on Lyricia so weened off Neurontin and went full time on Lyricia...and it was awful!!! Not only was I in pain(normal but still) BUT I was also a LOT more numb then normal..enough where it was bothering me like the pain. So I went back on Neurontin after weening off the Lyricia(I was getting tired of the ween period) and currently I take 1200mg x 3 a day and as you said 3600mg is the max dose here too.
It works the best for me...don't get me wrong I'm in pain the second I wake up till I thankfully fall asleep...but it helps me live and thankfully work and I've not had side effects like some....that said I now have RLS but that is another story.
Hi Tinabb, I also have SFN . I am currently taking Sevella, and Lyrica, and a small dose of Prednisone. With these medications, my SFN is managed pretty well.I still feel the tingling , but it is so much improved.My doctor wants to ween me off of Prednisone, but each time I lower the dosage, I feel worse.I am currently taking 5mg. My problem is a terrible pain when my skin is pressed slightly. I can't wear panty hose, or anything that causes pressure on my skin. The medications aren't a cure all, but I thank god for them anyway. I hope this is helpful information. Maybe you could try this combination of drugs.Hang in there, Oliejune
Oliejune,
Just wondering if you have been tested for fibromialga you are on a couple of meds. that is for fibro the Sevella and Lyrica.I know they can be used for both i have tried both before but when you say it hurts to have pain when your skin is touched.
Oliejune
