25, feel hopeless and scared
 

Hi everyone. I am a 25 year old female and I haven't been diagnosed with anything yet, but I think I probably will be soon.

About three months ago I had an episode where both of my hands went totally numb from the wrist down. At first I was diagnosed with carpal tunnel, since I work on a computer all day, and was given wrist splints, which helped, but not totally. I saw a neurologist and an EMG ruled out carpal tunnel entirely. The doctor said I was too young for carpal tunnel anyway, it was all due to anxiety and sent me home. His nurse practioner mentioned in passing the possibility of small fiber neuropathy. I do have a history of anxiety, I went home, kept wearing the splints just in case, and eventually the numbness went completely away. I felt great.

At the end of June, I started having terrible headaches and I eventually figured out my neck was the cause of the pain. I wound up with a pretty stiff neck, but by sleeping with a pillow the neck has healed almost entirely. The 4th of July was my last day of really bad neck pain. Since then it's been OK.

Then, just a few days ago, on Wednesday, I was going to work and noticed a burning in both of my hands... not really pain but that a prickly, needle like sensation. It went away but kept coming back... Every five to ten minutes I would have a little wave of tingliness. It has not stopped since then, and I have since developed little shots of pain, like I am being zapped with something in my hands. It helps me to take warm baths, and yesterday I tried exercise and that helped briefly... it's not in my legs at all, just my arms. When it first started it hurt me to comb my hair out in the morning. The last couple days I have not noticed any problem. Is it normal for the pain triggers to change like that? I am not overweight. I don't have good nutrition, I admit - I don't eat much, probably two small meals a day - but I don't think it could possibly be diabetes! Could it all be due to my neck?

Remembering what the nurse said I did some research online and found out about PN. Everything I read says that it is progressive, debilitating, you have to be on heavy, heavy pain meds, it gets worse and worse, there is nothing they can do. It doesn't hurt so bad right now, and it's not constant, but I am terrified and feel so hopeless... I am 25 years old. Everyone I find who has this seems to be middle-aged or older and while I feel for them, it's not the same. Before 2010 I was healthy as a horse and I don't understand why this is happening to me. Do I really have to look forward to fifty+ years of being on powerful drugs? What I want most in life is to have a family and I'm engaged to be married, but you can't be pregnant and taking all those pills can you?

I know I should go see a doctor but it seems pointless. It seems like the doctor can do nothing but help me "manage my pain" and at this point there is not much pain to manage... I have read "don't leave it go, it will get worse if you don't do anything about it" but does treating the pain slow down the disease? It will get worse, regardless. I know this is a lousy attitude to have since I have had only 5 days of symptoms... but I can't help it. I'm sitting here at the computer crying... is there any hope at all? Do young people get idiopathic PN? I'm so sorry for this post which must seem like a rant. I just don't know what to do.

Hi Maggyie
Welcome to our forum and I must say so sorry for your symptoms, it is early days for you and you really must take medical advice on this, SF PN is a weird disorder, I have had this since 31yrs old so no it doesnt just happen to older folks(although it is the same for everyone regardless of age) - in my case it has been a progression from one little toe to both feet and climbing over a period of 13 years - I have only been on pain meds for the past 3 years and most of the time i am able to function normally - I hold down a full time responsible job and am a busy wife and mother.
I cant stress enough you need to go back to the medics so that your anxiety can be alleviated, it cant be good for you - I always find distraction is better than a cure
Best wishes

Maggyie--check into gluten intolerance. You shouldn't have carpal tunnel at your age, is definitely correct. One of my sons, will be 29 in a few weeks, he had carpal tunnel surgery on one hand a few months ago, he is too young too. Gluten can cause neuropathy type symptoms, some times, once a person goes gluten free, the neuropathy goes away too. I was diagnosed with carpal tunnel before I knew what gluten was. Yet, because of my intolerance, I was not absorbing vitamins and minerals as I should, which caused the nerves to start dying.

Check into it, you might be surprised.

Yes, please follow Deb's suggestion.

There are many potential causes of your early sensations.
Low thyroid functions is one possibility. My hands and feet started up when I was 30 or so.

Diet, or low nutrient status are main players of PN, and the easiest to fix.

Try reading this thread for starters, and Welcome to NeuroTalk.

http://neurotalk.psychcentral.com/thread121683.html

Actually, given what you've written--
 

--and the intermittent nature of symptoms you've mentioned, this doesn't sound like a systemic neuropathy to me (you haven't had symptoms in other parts of the body, right?).

Others have mentioned possibilities, but have you had an MRI of the cervical spine? This sounds suspiciously like a problem there, which can absolutely produce variable symptoms in the hands. You may be a little young for arthritic bone spurs pressing on nerve roots there, but you're certainly not too young for disc bulges/herniations or other conditions that may be pressing on nerve roots or the cord itself, especially if you have a traumatic or athletic history.

Early age PN
 

Maggyie,
Don't give up the ship.

Only about 1/4 of all PN, (from what I've learned, both in here, and other research as well) is idiopathic. Fully 3/4 is caused by something else. Half is from diabetes, and another 1/4 is from some other cause in your body.

In my case, mine started in my feet, and eventually progressed to my hands. However, mine was caused by something called Waldenstroms. But, that's another story. In any case, as you have read here, get some medical help. If in fact this is PN, regardless of age, you'll need medical supervision, that's for sure. And, don't go "forecasting". I get on my wife for that often. Find out for sure before you go down that "doom" road. Who knows, it might not be anything related to PN at all. Find out for sure. And, good luck to you.;)

Thanks for the welcome and the replies everybody. I will check into gluten intolerance, vitamins etc. I have a terrible diet so I always suspect vitamin deficiency. When I had my first "episode" of numbness the neurologist ran a whole bunch of blood tests, I'm not sure for what vitamins but everything came back normal. Everything resolved itself so I didn't pursue what exactly I was tested for and what the numbers were, pretty dumb of me I must say. I was just so happy to be better.

As for having symptoms in other parts of my body... the last couple days I feel like there might be something going on in my legs/toes/feet as well. Little twitches of coldness etc. But I'm not sure if that isn't my anxiety taking over and magnifying normal every day feelings. Certainly they are NOTHING like what I feel in my hands.

Today when I woke up I had a good 20 mins or so without any odd sensations at all. Is that normal for PN? For them to come and go? Or is it more usual for it to be constant zappiness? When they say it "progresses" does that mean it goes from intermittant to constant? Or just that the location of pain advances? Lately I haven't had any of the "waves" of pin prickliness I had in the beginning. Where it sort of has a burny feeling. Instead it's just individual zaps on this finger or that.

Sorry for all the questions... I agree I need to be going to see my doctor. I am going to see my PCP first, although I guess I should call my neurologist. On the Neuropathy.org site, the one doctor listed in my area is actually the neurologist I've already seen, which is great, except I'm afraid he has me listed as a psych case from last time. The worst thing is when doctors don't listen to you or dismiss your symptoms. Back then (couple months ago) I had an EMG and an MRI of the head, to rule out MS, but not of the cervical spine. Since my neck has been causing me pain maybe that is the culprit?? Something in the upper vertebrae? My EMG was fabulous (doctor said I had better nerves than HE did) so could systemic PN develop in the course of just 8 weeks? Then again if it is SFN it wouldn't show on an EMG...

I do need to stop going down the "doom, doooooom" road. I am reading too much on the Internet I think. My sister, who has ulcerative colitis and had to have her colon out, cautioned me on this, when she had her surgery she googled and most of the stories she read were of procedures gone wrong or just plain old didn't help. Her surgery went great and she feels 100% better. Do most people get to live full, active lives with PN? Is it the majority or the minority who struggle with pain control etc? After all millions of people have it and most of them can't be totally disabled can they? I'm just grasping at straws...

Another symptom of gluten intolerance...your sister may be intolerant too, it does tend to run in families, so definitely get it checked out.:hug:

She works on the computer all day, can't help
 

Hi Maggie, it's good you are tackling this right away cause nerves can heal when they are helped soon after they are damaged. Plus many PN patients have lighter cases and are not on heavy medicines. They just don't need as much help and don't post on websites and you don't hear about them as much. They're the ones all the Drs. know about.

I'm older and have had SFPN for 11 yrs but 2 yrs before that started, I had a light case of carpal tunnel start and some of your symptoms sound familiar. I wore the wrist splints at night and took either vitamin B1 or B6 daily (I can't remember which is for that, don't exceed 100mg of B6/day). This cleared up quickly, in case yours starts up again. I worked with my hands all my career. I also had tarsal tunnel syndrome when my SFPN started but surgery took care of it. So I think I was prone to neuropathies when I had a cause. I did find pre-diabetes as a cause by taking the glucose tolerance test with blood drawn at 1/2 hr, 1 hr, and 2 hr. Also advised is to continue that test longer with draws at 3, 4, and 5 hrs. to check for lows. Taking insulin samples is also advised.

Hi first I am sorry for what you are facing. I got dx at 28 with PN and along the way have developed other conditions where doctors have said they have rarely seen it in someone my age. So when ever I hear that about age now I don't just accept that answer. To me it just means the doctor is not willing to look outside the box and work hard. Right now and I knot it is very hard it is key to stay in the day. Many people do have full lives even with a dx like this with the right pain control and treatment. I know it is hard to get motivated but really I hope you make an appointment with a neurologist. Proper dx and treatment and early is really key to this. Can you ask your family for support? Hang in there.

Thought I would post an update. I'm so glad to hear that many light cases of PN exist. I wish there were statistics somewhere that say "symptoms were tolerable in THIS percentage of patients" or "THIS medication provided satisfactory quality of life for THIS percentage of patients." I am such a control freak, I like to know my odds!

Went to see my PCP today, and he zeroed in on my neck right away. So I've had x-rays done and hopefully he will be able to read them in the next couple days. He thinks I might need physical therapy to get the neck situation straightened out, that I am doing something while I am sleeping to mess it up.

He is also suspicious because my pattern of pain is opposite to many people with PN. It's worse in the mornings/day time, and then almost as soon as I leave work the symptoms start to disappear until they are almost entirely gone before I climb into the the bath for my nightly soak. I fall asleep very easily. Last night I was talking on the phone to my future husband for 45 minutes, cradling the phone in my hand, and at the end of the call I realized I hadn't had any symptoms in that entire time. Has anyone ever heard of that happening with PN? Where it actually gets BETTER as night comes on?

I'm just praying they find something wrong with my neck and that's what it is. It still feels a bit sore so hopefully.... argh.

When my neck went south, the first symptom I had was numbness and tingling down my left arm into my thumb and index fingers. Any work I did with elevated elbows (sorting mail, typing, answering the phone) put a strain on the neck. About the only relief I could get was to lie flat; but my neck was in pretty bad shape at the time (had to have 2 discs removed eventually).

Hopefully with some PT and posture corrections, these symptoms will improve.

You might want to check out the Spinal Disorders board to see if your problem is addressed there.

Good luck.

Well, my x-ray came back totally clean. I don't know whether to be happy or unhappy. Actually I'm pretty unhappy. I just want a diagnosis.

The last couple days my symptoms have backed off big time, though. yesterday I was good from around 11 am onward, today I almost haven't been bothered at all. My hands just feel more... relaxed? And no burning, tingling, pain, nothing. My neck pain also seems to be healing at the same time.I started using hot compresses on my neck/back last night so I wonder if that has something to do with it.

I'm almost afraid to hope that this episode is almost over with. Please, God, don't let it come back over the weekend/next week. I know there is such a thing as relapsing/remitting PN, but I don't think the flare ups last just seven days :confused:

I guess I'm going back to the PCP regardless. Maybe physical therapy will get rid of this now that it's knocked back on its heels.

I have to ask why you would want to go ahead with PT if you are doing better? Don't mess with that which isn't broken is often times a good rule of thumb. If you are doing better, then I wouldn't do the PT either, not for now anyways.

I am a PT failure, so to speak. I have chronic headaches, with pain in my neck and shoulders. I had a cervical MRI which did show slightly herniated discs. My neuro felt I may benefit from PT, to try it for 12 sessions or so. I did. I went to PT with pain in my neck, radiating into my right shoulder. I had PT 3 times a week, heat therapy, which was great, then gentle massage with a 10 minute break, then more intense massage therapy, off to an exercise machine, then more massage. By the 4th or 5th session, my left shoulder was hurting more than my right did before therapy, and that never improved. By the end of 11 sessions, I felt I was in worse shape than when I started out. My neuro said we will not try that again.

I always try to follow through on anything the doctors ask me to try, very seldom have I ever told them no. PT was a mistake for me, and to this day, I still have neck/shoulder pain, it comes and goes. I find stress is my worst enemy.

Just my opinion, I wouldn't do PT for now, not when you symptoms seem to be getting better. :hug:

It is imperative that you see a neurologist who deals with neuropathies asap.
This will answer many questions and alleviate the agony (read... stress) of not knowing if you should proceed along that route. It is highly conceivable that your problem is reversible and not damaged nerves but of a compression type problem ...somewhere.
PT can be putting the cart before the horse and may possibly make things worse.
See a PN specialist first!

i agree. hold off on the pt until you see how this improvement plays out. depending on what is wrong and if its known what exactly is wrong you can do more damage than not with pt.

Hi Maggyie,

I was just reading here and after seeing your mention of computer work & hand pains, neck pain, headaches - I just wanted to suggest that you might want to read a bit on our Thoracic Outlet Syndrome {TOS} forum.
Just in case some of those symptoms sound familiar.

How is your overall posture & computer set up?

Head held forward of the body?
shoulders rolled forward or hunched often?
one shoulder higher than the other?
can you hold your hands up in the stick em up position without symptoms/or pain increases
more in the TOS sticky threads {sticky threads -look for green circle icon with black arrow up in the section near the top of the thread list}

Any prior car accidents{whiplash}, sports injuries, hits, falls etc - to the upper body? those can be a factor in spinal misalignment {I have some info on that in the TOS sticky too - under chiropractic}

If it is work related/posture related most likely a very good PT would help, but poor PT usually will not help and may make things worse.
If PT does not feel like it is helping, or making things worse, we as clients need to speak up, if they don't listen and don't make adjustments to our care they are not good at their job.

Strange pains
 

You sound so terribly stressed. I was in a similar position about 40 years ago, suffering terribly from back pains. I was working fulltime, had three small children and a husband who considered it "women's work" to cook or clean. I finally had a nurse practioner recommend YOGA! It was wonderful. Within three weeks of taking a yoga class once a week and doing the exercises every night, I was completely without pain. I hope that you can try this. It is so relaxing I made sure it was the last thing I did at night because I then just crawled into bed and went instantly to sleep.

Well, it's been about a week and a half now with no symptoms whatsoever. I'm grateful, but I'm guessing that my symptoms were likely the result of anxiety. I've been having trouble sleeping, too... classic... I guess it's finally time to go see "the talky doctor" as my eight year old niece calls it. I'm very sorry that I wasted the time of people who *are* dealing with an incurable disorder and suffering from *real* pain :frown: Thank you so much to everyone for taking the time to reassure me and try to find out what was wrong. Honestly, it's truly humanitarian service.

Whoa!! Backspace? Think on it a bit?
 

Rite now you are worrying about pain or non-pain to the point where it's keeping you up at nites? Something IS going on physcially to set off that sort of reaction, internally.
Take a look at this site and learn about neuro evaluations...they are complcated. Nerves are Smaller than hair strands!
Read these to 'stickies' [at the top of the forum] and then read more stickies to get into the why's and wherefores of what's done...
http://www.neuroexam.com/content.php?p=2 This is about what all happens and what a neuro is looking for during his exam. Then?
http://www.aafp.org/afp/980215ap/poncelet.html This explains a lot of the variables that relate to diagnosing neuropathies.
The usual tests are a neck/spine + sometimes pelvic x-ray or MRI to see if damage or compressed discs or other things are involved.
Then, blood work: Both CBC [Complete Blood Counts] and CMP [Complete Metabolic Panels] Followed by a possible glucose tolerance test for pre-diabetes or diabetes. Then, Nerve Conduction Studies and if warranted from the blood work? Possibly a spinal tap. These all might not be done? But the blood work and the x-ray/MRI aspects should be checked out.
So many of us here have all had these tests. Some sound at first? Horrid? But we all are walking and talking and griping! So I guess they're OK.
Honestly, I'd rather do these tests than get a colonoscopy! And, they're easier to tolerate [at least for me] than those annual mammograms!
I hope this helps you to learn to learn more specifically about what is going on with you. When you don't know and are scared? You have no clues where to learn or what questions to ask... I hope these sites will help you and feel free to ask us more questions! Better to address any possible problems NOW than deal with them in an ER or worse, You know? So don't get to that point! I say this all because so many of us have gone thru this route of 'round-robin' and around again. Sometimes getting a diagnosis can take a heap of work? But it can pay off in the long term!
Hugs etc. :hug::hug::hug:'s - j