new event, soo scared. Autonomic sfn?
 

I've felt that I've had a hard heartbeat that pulsates through my whole body for a while. However, last week I had a horrible spread of pain up into my scalp. With this horrible pain that squeezed my head and made it feel like it was being stabbed came the fast seizure like shaking in my face and throat, and back of neck. I have this over the rest of my body but these areas were spared.
Now, it's spreading down to the front of my chest. My heart feels like it is shaking fast and hard too. My pulse along with it.... I'm scared is this autonomic neuropathy? Is this what's capable of killing me?? Please share if u any info

Hello canagirl. Calm down, I personally think that this is not autonomic sfn but it is just anxiety, because I have also the ame feelings and had them before my sfn symptoms started.

I do have anxiety but don't Beleive this to be related. I've had this sensation almost body wide for 8 months ( constant, never stops). Up until now it was not in my neck , face or chest.

I feel like I'm rapidly approaching the end of my tolerance. The burning has deepened and spread, to almost everywhere now ( lower chest and upper abdomen spared for now). The burnung and stinging is so bad I feel numb. The large nerves I can feel buzz vibrate and shake. I must have turned this into central pain syndrome with all my anxiety. I'm feel like I am killing myself with all this ( I know that I am and I can't stop). No psychologist or any other doc can help. Life is torture. Despite spending hours pouring over old posts I don't see anybody improve, only worsen. This is making me evn more crazy. I'm going to ask for a long standing script of benzos. I can't do this anymore. I need to stop this insane cycle of pain, anxiety, fear etc and fear being sedated is the only way. I'll start tomorrow hopefully. Any body have advice ? I'm already so bad what does worse look like?

Out of my mind right now. Literally. Why doesn't the burning and stinging ever let up? It seems to travel and let up for most people here. Why is mine so widespread and active every second? Anybody know or can relate?

Canagirl what do the doctors say about this=

I forgot to ask you how you manage your baby with this problems :( I am so scared

Canagirl, I understand the feeling of the shaking everywhere and I've had it in my neck and head to the point I felt like I was going to have an aneurysm. It is truly a disgusting feeling.

You did not do this to yourself.
Did you have an anxiety disorder before the nerve stuff started?

Not everyone gets worse. I am not doing well right now, but I haven't completely relapsed to the hideous state that I was in. I am in a lot of pain, but the vibrating is settling again for now and I am staying calm.
Have you taken benzos before? I think if taken every day they can cause depression and agitation. IDK. Throughout the last 10 days I have been taking 1-1/2 up to 7.5 mg valium a day to stop the muscle spasms in my neck and traps and this is the longest Ive been on them for months and they make me feel kind of gross. I think they are ok a few times a week but be careful.

How far are you from a teaching hospital or a large hospital like one of the Mayo clinics? These places are often great at diagnosing and will run many tests in a few days. It is a good way to get answers without having to wait weeks or months between tests, visits etc.
When I went to the Rochester Mayo, which depending where you are in Canada, might be your closest, they ran 4 straight days of testing. It was all coordinated so I could just go from one to another.
Then you meet back with the neurologist and he will go over all of the test results with you.
They will give recommendations that you can bring back for your own Dr. and there is a pain management clinic there as well.
You don't have a diagnosis yet --right??

In Canada we don't have a mayo clinic type of hospital and I can't afford to travel to the U.S. and payout of pocket. I do have a sfn diagnosis by skin biopsy. I know the cause is from acupuncture. I should have known better but I caused this spread. I had been having pain at one if my acuouncture points ( pain for months already). I finally had enough and got my husband to massage it. Well a few hours later the pain was horrible ( base of neck upper shoulder area along spine) that's it, later that night that night the pain went up my neck into my scalp and down Into my face. The pain is throbbing along the nerve tracts, burning, stinging, squeezing and immense pressure inside the middle of my head. This spread caused the rest of my body to flare up. It's excrucuating everywhere.
I have an appiintment with the neuro this afternoon and don't know what to ask for. There is no help for me, my nerves are physically damaged from trauma. It's getting worse by the day...

Barbie, my husband and mom manage my baby

Healthgal,
Thank for the response. It's so hard. I can't sleep when I do I know I'm awake before I really know that I'm awake because the burning stinging pain comes roaring bsck. It's in my mouth ( tongue, guns, teeth) in my nostrils, etc everywhere. It's horrendous. I haven't been in this pain since before meds and now it's worse.
I haven't been on benzo before. I've never had anxiety before sfn. However I've turned this into central pain syndrome with all my anxiety and inability to do anything other than focus on pain. Ibneed something that will check me out everyday all day. I know I'm only 31 and that's too young for all these meds. But, what choice do I have. My PC doc keeps warning me about meds and to stay in as little as possible because tolerance builds and dosages need to be increased until med doesn't work anymore. I need meds to work for perhaps another 60 years so I can't run through too quickly. But i have no choice. I will be upping my gabaoentin to 1800 from 1200 . I will tell my neuro of this increase. Many people seem to have success with 1800. I need to do something for relief. It's excruciating. It's wrapping Around my lungs and making it difficult to breath because of the burning.

The plan from neuro is to up gaba to 1800 then add Cymbalta. She referred me to pain clinic but it's about a 2 year wait. She is doing a few autoimmune tests. I asked for a Riund if steroids and she said no. I asked for ivig she said no, it's only used for demyelination neuropathies and does not help sfn. She seems like she's just labelling it idiopathic and that's the end. She said I don't have diabetes and don't drink so that's pretty much the end of the game. She's the only doc that deals with this stuff here so I'm not sure what to do next. I had to ask for autoimmune testing she had no plans for further testing. Her goal for seeing me today was to talk about pain control. Ugh...

She also said I'm showing atypical sfn because I have no clinical findings, it's non length dependant ( which is apparently rare) and its seems to be only my pain fibers because my temperature feeling seems to be ok.

Hi Canagirl,

I have non-length dependant sfn, i am seeing my neuro this afternoon. He is supposed to be an expert in PN. He thinks that mine is an inflammatory process, so has suggested a trial of Steriods or trial of IVig. . The professor i saw in London also suggested if autoimmune or inflammation, this line of treatment has helped others. I am surprised they will not offer you a trial of something. I am pretty new to this too so i may be wrong, this is just what i have been told. I have also heard Cymbalta is supposed to be very good.

The funny part is that most primary doctors will give a round of steroids when someone complains about a sore shoulder. They seem to give it out like candy.
I tried two -3 days on the steroids and was a shaking stomach burning mess. Had to stop.
For some autoimmune conditions it helps knock it down though. I have friend with lupus and she has to do a round a few times a year and it puts her back in check.
They won't give me IVIG either and I am in NYC. Was told it was risky and not used for SFN, yet I hear other people from other places can get the treatment and it can help.

You can't go to a rheumatologist? Have you even had an ANA test?

My Ana is normal. I asked for a rheumy doc and she said no. I'm going to ask my pc doc.

Healthgal is ur sfn non length dependant?

She also said there is no getting better or improvement to be had. She said if it was diabetes or alcohol I might get some improvements if I changed my lifestyle but even that would be rare and not make me 100% better

Hello Canagirl,

I have just come back from Neuro appointment, so thought I would share with you. Mine is same as yours non length dependant.

I have asked neuro a load of questions, he is not just a regular neuro, he actually specialises in PN and works in London and sees a lot of people with SFN.

Canagirl, I asked if it can get better, his response was yes 'it can burn out in some cases', which he has seen in some of his patients in London. I asked him what he meant by 'burn out' he says sometimes, it just goes away!

He is putting me on 5 days in hospital on steroids, he said some patients have had a good response from this. He has also putting an application for ivig for on going treatment, he said he had a woman from Gibralter, who comes over every 8 weeks who has an amazing response from IVIG.

I just thought I would share , as I thought the neuro was very positive and helpful.

You need MORE Gabapentin then 1800. Most with severe neuropathy take up to 3000 mg a day or MORE. 1200, is nothing really compared to the pain you describe and 1800 you plan to increase to isn't much more. You may notice a small change, but you need a much bigger increase (slowly of course, but steady increases).

I honestly don't think your SFN is from the acupuncture, because you went to get the acupuncture due to nerve pain you were ALREADY having. Yes, I think it made it worse but it is NOT the cause of this and you should still try to explore possible causes while you treat your pain. You have been at 1200 mg for a while with no increase. Your GP is not a pain specialist or neurologist. You need to see a pain mgmt doctor or get your neurologist to properly treat your pain with larger doses of Gabapentin. Other drugs can be used with Gabapentin as well...but you need someone experienced in prescribing your meds.

en bloc,

I agree with all of these points. I was on 1800 mg it's not enough when you have significant body-wide burning. I'm on 2400 mg now with a small dose of nortriptyline and it's really not enough to function properly.


Hi Canagirl,

I'm sorry that you are going through this. Neuros also say that NLD-SFN is rare (mine did), but IMO I think it's uncommon, not rare. It seems to be under identified and easily written off as being caused by other things.

Maybe re-read my post to you from before:

http://neurotalk.psychcentral.com/post1148803-9.html

This likely didn't come from trauma. There are many of us here with the same thing and we are all searching for a cause and for a way to deal with this. You are not alone.

Hi en bloc,

My neuro did refer me to the pain management clinic but she said it's about a 2 year wait....
She said to start with ramp up to 1800 gabapentin and at that point she will add 30 my Cymbalta. She said if that doesn't work we can keep upping the gaba until 3200.

. I talked to my gp about giving me steroids and he said he doesn't feel comfortable doing IT because I would need very high doses and steroids can cause serious problems. He said it would have to be a specialist. I asked the neuro about a nerve block to help with the head and scalp pain and pressure and she said that doesn't help and it's only used for people that have arthritis...I told my gp this and said not true, he said he does hundreds of them in his office. He told me to do some stretches on that area ( a lot for 10 days) if that doesn't help he will try injecting one side of my head to see what happens. I'm not sure what type of injection ( forgot to ask the name). He said he doesn't inject into the nerve but beside it. The goal is loosen muscle around the nerve to relive the pain. A trigger point shot?.. Anybody know what this is and if it may be helpful?

A specialist is a good idea for steroid, as yes, they can cause serious and permanent health problems with long term use.

But it would be a good thing to try...just to see if your neuropathy is inflammatory based. They could do 40-60 mg of Prednisone a day for 5-7 days and by then you would know if it would help at all. If it does, then you should see someone about long term treatment and whether you would benefit. Sometimes even smaller doses are enough to help the inflammation and pain. It's the one proof positive test to tell if it is inflammatory based neuropathy.

I agree with en-bloc, it is worth a try, this is the treatment which I will be having, it is only short term so there shouldn't be any serious side effects

Sounds like your GP is a little more helpful than the others. Can you ask him/her to prescribe prednisone for you. It is a commonly prescribed drug for many different things from poison ivy to lingering coughs etc. I'm surprised they are giving you such a hard time with this, it's a very inexpensive drug.

2 years to get into a pain management clinic?? That is ridiculous. Do you have other options, so you could possibly get a different neurologist?

That is a long time to get into the clinic....but it is at minimum 6 months to get into the pain clinic at the teaching hospital in Madison, WI.

Northerngal is absolutely right...your GP can Rx the Prednisone. When I mentioned specialist, I was meaning if you were to take long term...so specialist would know what to look for in regards to monitoring damage and other side-effects.

But for initial trial to see if your neuropathy is inflammatory by all means, your GP can do the 5-7 day course. It is super inexpensive and very low risk of problems (with just a short term course). You would at least know one way or the other whether your neuropathy is inflammation based. If it is, then you can see specialist to discuss and assess whether long term (and what dose) is appropriate.

What did your neuro say today? I don't understand why he hasn't considered short course of steroids to check for inflammatory based neuropathy.

I asked my gp for the steroids today ( even a short course) and he said no, he doesn't feel comfortable with it. The neuro just flat out said no because it doesn't help sfn, same with ivig. I'm going to try to find some literature that says it does and present it to her

The neuro said its about1.5-2 year wait list. She said she would refer me to the private clinic as well because it's a shorter wait but it's sooo expensive, I don't know if I can afford it. For example 1 lidocaine infusion is 2000

Sorry about the no go on the steroids.

I hope that the gabapentin increase and cymbalta offer some respite in the meantime.

Here's a link to the company that did your skin biopsy (I'm pretty sure you said Therapath did it). Read the last paragraph about Prednisone and acute onset (which is what happened to you).

https://www.therapath.com/tests/skin...ber-neuropathy

It's about as logical as it can get...if the cause is inflammation, then steroids will likely help. Have you had a CRP or ESR lab done to check for inflammation?

I can't help but question this Dr. -- He is willing to inject a nerve blocking agent into your head.....but he is not willing to run a coarse of steroids for you?? Side effects from steroids are mostly from long term use. As a GP he should be quite experienced in prednisone use. Most GP doctors do not refer their patients to a specialist for prednisone.
Yes, for your neurological symptoms, you need a specialist, and it would be best if the neurologist would try something to help you, but since this isn't happening your GP should step in. Maybe you could find some information to show him that would help him with the dosing info.
I am 5'9" weigh 144, when I tried prednisone, my neurologist prescribed 60 mg for 3 months.

Hey, All... really, such good advice from you all to Canagirl and anybody else who experiences the misery of body-wide neuropathy. I have a few comments I just had to reiterate. The first is, one can't "cause" central pain syndrome. You positively can't do anything, even unwittingly, to cause this. I have gone to a well-recognized pain management doctor and seen a zillion specialists. The central nervous system responds to an insult, maybe prolonged peripheral nerve damage with associated pain, illness, stroke, or in my case a virus, that launches us into an errant pain cycle/response. So, any guilt or anger directed towards yourself is ill-placed. Sure, be angry that this dreadful condition has befallen you, but blaming yourself is wasted energy.
Second, fight as hard as you possibly know how to not let this steal away every bit of the life you have and who you are. It's been through pure personal steel and the grace of God that I have retained my employment and continued to be a single mother to two young children. It's amazing what you CAN do when you have no option, when you're desperately needed by those around you, and when you muster the determination to keep on living, despite the days when it's damn hard to get out of bed.
I remember when it all started with me, the panic and fear. The burning and paresthesia and muscle spasms spread through me like wild fire until, yes, it is absolutely everywhere, including my face, mouth, gums, teeth, throat, inner ears and nose. So, I really get it. I appreciate the other poster's comment that she thought she was having a stroke. I feel that way every once in a while still because of the intense paresthesia in my face, and my only consolation is I wake up every day still here... no stroke. Scary as hell, though! Even though the pain is still intolerable, at least I'm familiar with it. I'm on 1800 to 2100 mg. of gabapentin, and so far it's been the only med I've been able to tolerate, even though it definitely has it's side effects. I'm currently working through some other pain med options, but no luck yet. The balance that I need to strike between medication side effects and maintaining an active life is hard.
I kept hoping for the day this would go away, but I realize that isn't likely after many years now. Hope still creeps in every once in awhile, but at some point I realized that waiting to get better was getting in the way of coping with reality and living life, albeit a dramatically different life. Maybe you could just set small personal goals every day, especially goals associated with your child and husband, that could restore routine and even make you smile once in a while. Beyond the grief and fear and panic of what's happened to you (to several of us here), there can be moments of happiness.
And finally, my pain management doctor did make reference to this "burning out" possibility, too. He said that sometimes, with time, maybe significant time, the brain actually can rewire around whatever "misfiring" is occurring... sort of a self-lobotomy. Definitely not a sophisticated summary of what he really said, but hopefully you get the point. I can only hope.

After reading the discussion involving steroids it seems foolish not to try them
short term. It seems you can discover a lot via a positive gain or hopefully not, but even a negative reaction.

I hope that the increase in Gabapentin helps Canagirl. I can't relate on the bodywide front, but the relentless symptoms front, well over three years in, massive adjustments, some ebb and flow, flares like now.

Stress is a proven escalator for me. Takes a bad day and makes it putrid. Extrapolate as you will. There are some meditation threads in the chronic pain section I believe. I have tried working on mindfulness, with results varying.

Somedays I have what it takes to cope and others I don't.

Try the logical approach using literature from the company that tested you buopsy as enbloc suggested. It sounds, er sound.

Wishing you a respite,

Jon

Thanks everyone. I will keep pushing and I will show my neuro the info en bloc presented ( thanks for that. Although it's funny my neuro didn't know that considering it's the lab she uses). Can muscle inflammation ( from an injury in ur back) Be the pure cause of pn symptoms? If the steroids take away the inflammation could u be " cured" or much improved if the steroids knock out the inflammation for good?

My gp told me to stetch my neck and back with one simple excercise. I did that all day today and now in twitching and vibrating all up down my spinal cord and vibrating into my arms and legs ( new and different feeling than normal). Makes me think a lot of this is muscle inflammation

Each person responds differently to the steroids, so it is hard to tell. In an old cidp board I was on, there were people who improved dramatically on just a few weeks of them. Then others, myself included, they did nothing for.

They really only work IF the neuropathy is due to inflammation. And as we all know, there is MANY causes of neuropathy, so this may/may not help you...but I think it is definitely worth a trial.

But you are correct if the source of the problem is inflammation in the back, the steroids can reduce that inflammation and greatly improve your situation and pain level. But again, it comes down to inflammation and whether that is the true source.

Have you had a CRP or ESR lab test? These are markers for inflammation.

Keep in mind that steroids have some possible side-effects even for short term use. They MAY cause insomnia, weight gain, stomach upset, increases in blood sugar. And once your take them for more then 7 days, you MUST taper VERY slowly to get off.

Must you have CRP/ ESR levels out of whack to have inflammation?
Also, what ever is causing the inflammation is the culprit, so how can the steroids "put it away".
I know it can in some cases. My husband had horrible shoulder pain that would come and go for a year. He finally went to the dr, they prescribed the medrol dose pack and with in a week he was better and it never returned. This is why he thinks steroids are the answer to everything. I just think with a systemic think that is going after certain proteins or organs, I can't see how it can help.
Having said all of this though, I have just been rejected by my neuro to try steroids again. He still wants to wait. UGH!
I just don't know. I know that I could probably find a GP that would put me on in heartbeat, but I'm afraid because I had all of the symptoms you mentioned after 2-3 days and it was awful.

Hi canagirl. i would caution you against over stretching. The same thing happened to me when I started stretching the back of my legs to relieve pain. At first it helped and so I did it more and then it triggered my symptoms. It's the same with exercise. Some is good, too much is bad. Moderation for me is really key with this disease. I have always been a 150% sort of girl and really have had to hold myself back and slow down. :hug:

NO...CRP & ESR are just markers and sometimes reflect accurate levels of inflammation but they are by no means always right. It is quite possible to have inflammation without these markers reflecting it. But if it does show elevated levels, then her doctor would have more reason to try the steroids AND to continue to look for the culprit.