Disabling Fatigue- Heat intolerant It it my neuropathy
 

I have been on-line for hours trying to find a complete list of symptoms of neuropathy. Its as if each site quotes the same article. So help.
I have small fiber neuropathy,painful arms, legs, lips, face, feet of course.
Feet started being painful one year ago, so a fast downhill slide.
Back to my questions.
I have days when suddenly I am just about unable to do anything, even driving is impaired, lousy concentration, spacy and tired tired tired but Not sleepy.Once it starts the day is lost and I just go home, sometimes it starts before getting out of bed and I finally get up late and stay home. I work for myself so no paid sick days .
I just want to sit or lay down and this is not related to pain.It could be a painless day.
I think its so hard to tell what is the neuropathy and what could be some other problem.
The fatigue is disabling. IS this part of neuropathy?
I'm pretty much without meds except occasionally Ultram 50-mg when I want to feel good. The other drugs just mess up my energy and thinking to much to tolerate.
Also I am intolerant of heat,last weeks in the high 90's and even 100's have been scary. I think if my car died on the highway I just might have to call 911 or die. I've never been a person who sweats,but this is way past being uncomfortable. Anyone have this experience.
I love the cold except now my feet turn icey. that just started last winter.
So thanks I can't believe how hard it is to find out much about this disorder.

Question for Savannah
 

Hi Savannah. I'm new to the forum and I couldn't help but hear your cry for help. I'm a physician (Internal Medicine not neurology) but I have great deal of clinical experience. Do you have any visual symptoms? Double vision, or eye pain? Do you have over-reactive reflexes on one side more than another? If so, you may have multiple sclerosis. if you are certain you have a neuropathy, it's possible you may have developed a neuropathY.:winky:

reply to question
 

I do have some burning in my eye ( not dry eye) but infrequent and just barely noticable. I have a positive skin biosposy for small fiber and also postitve R to R test (cardiac). When I asked my neurologist about MS he said it strikes younger people. I'm 58 female otherwise healthy. I was a kidney donor so they work you up throughly for that (ten years ago) and all was good at that time. I've had 3 hour glucose test also neg. Lots of blood work, neg.
My neurologist has stated he is not a PN expert and that my symptoms are not classic. He referred me to Mayo but that's very expensive.
Thanks for your interest.

Maybe you can send your test results to Mayo first and see what they say before going there. I am very sensitive to temps. My issue is more with the cold but humidity heat hurts me very badly. I have pn but similar to rsd too.Now I am no expert but have you looked into other diagnosis other then pn like fibromyalgia? Sometimes I think we concentrate on one dx but there may be more. The fatigue stands out to me as something that is in fibromyalgia or myofacial pain I think it is?Hang in there

Testing
 

Your testing seems to be pretty good, the only thing I can think of is the autoimmune testing. Have you looked at www.lizajane.com ? The fatigue stands out to me also and is one of the things that has been the most disabling about my Sjogren's Syndrome. Also, what kind of testing was done to determine whether or not you have dry eye vs. eye pain only?

Billye

I've posted these elsewhere but you need them too
 

These are also in LizaJane's site but not as well organized here:
http://neuromuscular.wustl.edu/over/labdis.html#Ab
http://neuromuscular.wustl.edu/lab/nvworkup.htm#lab

The basic site runs down dozens of myopathies and neuropathies starting with the symptoms. If you slog thru it all, and prepare to be a bit confused in the process, you mite be able to narrow some things down in your situation.
http://neuromuscular.wustl.edu/naltbrain.html
It's pretty much the most comprehensive of sites that describes the different neuropathies and myopathies....

This way you can see what tests have been done and why...sometimes doctors don't go to the next step tho.

Fatigue is common in many neuropathies! Often it is a primary symptom. Thing is, it is symptom of soo many other neurological and other medical conditions as well! That's what makes it so hard to zero in on what YOUR issues are. As good as many neuro's are, it's going to be/GOT TO BE up to you to keep persisting in getting a diagnosis.
My first diagnosis was a 'simple PN' and that neuro did nothing further despite a rapid progression of numbness throughout my body. I went and got second and THIRD opinions and found I had an auto-immune PN called CIDP. IF I had not known that things plain old 'weren't right' and gotten those other opinions, I could now be in a wheelchair - or worse. I am not there and I am grateful to ever so many here for helping me learn that YES! Things weren't right. I was and I'm lucky that I kept at it while I could get all the testing needed. You can and will too - end of pep talk.

If your docs are continuing to do 'another' test, then yet 'another'...that's a good sign...They've not given up or admitted that they don't know what to do - and do nothing. Getting a top notch second opinion is cheap, really cheap [even if it's out of your insurance plans' coverages] in the long run because it'll spur your plans' docs to keep up with the 'experts'! You'd be surprised at how many 'results' you can get that way.

:hug::hug:'s - j

Savannah
 

Hopefully you will find information in the links listed above to help with the testing - if you do have neuropathy and it is something that can be treated - that is so great.....

As for fatique and heal intolerarence - with PN a definate yes for me anyway... I have never been one to ever sleep during the day - when I first got PN 9 years ago quickly I learned that a 3 hour trip to the doctor exhuasted me for next two days... now I'm actually almost collapsing when I get home and sleep for hours for any trip out - and I cannot kick it - so yes, definately part of the illness for me... Also, heat intolerance - I've never liked heat but didnt get sick from it - now I do - literally - last summer was ER after a 10 minute ride in an air condiioned car to the doc - with heat exhuastion (it was 115) - we're having triple digit temps right now where I live - have been for days - and will coninue on and off all summer - I have to try to limit any outside exposure at all - and listen to my body - which apparently cannot adjust to the severe temp changes...

I have heridiatary sensory, autonomic, and motor neuropathy - after many years of testing and biopsies and docs consuting with one another on diagnosis - and while there is really nothing I can do but most importantly treat the autominic symtoms that affect cardiac and GI fuctions - at least I know what I'm up against and also to respect my body - its not what it was -and its gonna let me know if I try (which I do all the time) to fight it....

I hope you can get your docs to work with you on the testing - and that all bases are covered!:)

Welcome ...
 

to you both, savannah and bodhi brainMD!:D

Savannah, I have extreme heat intolerance, along with my neuropathy. (In all fairness, I must mention my doctor is also in the midst of ruling out MS again.) I am "in trouble" if the ambient air temp is above 65 or so, and especially if it is humid! As soon as I cool off, things are fine.

When I was working with a physical therapist, trying to build more enduarance, we'd place ice packs on my spine immediately after I was done exercising, in order to try to cool my body core temp as rapidly as possible.

Many have given great links and information!:D

People here are very compassionate, intelligent and helpful!:grouphug:

I hope you find the information and the support you are looking for here!

Thanks everyone, I'm having a bad week for no reason I can figure out. I just wanted to know if this exhaustion I feel is part of small fiber PN. I had a follow up NC and EMG and still thankfully no large fiber involvement.
I have been doing the research and finding nothing that fits my symptoms.
I now am nervous to go to sleep because immediately the pain increase. It is not subjective as stated in many articles( no distractions) but positional, laying down increases the pain . I have tried taking pain meds before sleep but unless I really load up by 2 or 3am I am awake and hurting.
I don't know how anyone lives this way. I'm now beginning to NOT be able to stop the pain and sleep. Of course not sleeping will lead to more pain. Round and round.

Pain, or MORE pain at nite
 

is a very common symptom...no one knows why. Maybe because we are 'moving' less? Only YOU can determine that.

As for sleeping all nite? I don't know if you are working, but if not, don't fight it! I found at first that I would do series of naps of 15-45 minutes during the day and really only was able to sleep no more than 4 hours consecutively at any given time. I wore out a recliner...I've just about worn out a second one...I LIVE in it! Often I find that mattress a torture chamber.

This is why many docs, neuros too, often prescribe anti-anxiety or tranquilizers to help folks sleep..these don't work for me...SSRI's and MOAI's{?} knock me on the floor for days..... So I do the warm milk thing, and herbals such as valerian and chammomile... They help 'some', and I get by... I would not accept tho, a doc prescribing ONLY such meds to treat neuropathies, unless they work....many are known only to have effect for 2-4 months from stuff I've read. We must build up a tolerance or something.
HOpe this helps!!!!! - j

pain at night....
 

I have often wondered about pain at night too.

It appears at least for me... that when walking around I have little pain/burning.

As soon as I lie down, within 20 minutes it starts. If I get up and walk around, it goes away.

I think, that other nerve pathways get priority when we are moving around. Proprioceptive nerves especially are important for walking. I think this is like the heat receptors vs cold ones.
When we use menthol, and stimulate the cold receptors, they take priority and over ride the heat ones for a while (as long as the menthol is there). I read about this nerve priority on a paper once a while back while looking for the reason Menthol works so well. So I think that this "priority" issue is present for night time pain. Once we are off the feet, those signals end, and the old burning ones then get thru.

Just my impression.

night pain New Research/treatment Ideas??
 

I have been researching about night pain and most of the doctors think we feel more pain because we have nothing else going on to distract us from the sensations.
Not True, mine begins immediately on laying down , way before I am asleep.
There is a very interesting article in this weeks New Yorker mag. also available newyorker.com.
Its about horrififc itching but the explanation of how nerves send messages to the brain is very different than what we have been told AND the treatment is amazing. Using mirrors to fool the brain and it works. Cures phatom pain (missing limb).
While reading it late last night I believe it may be relevant to our pain sensations. I hope to write the researcher for advice.
Read the whole article as the relevant part is towards the end.

I often read in bed...
 

My mind is just as engaged reading as typing here.

The only difference is that my feet are on the floor, sitting at the computer.

If I read or not, my feet feel the same within 20 min of lying down.

The various pathways are labeled afferent, and efferent.
If you keyword search those terms you will find physiology texts, that explain it.

The feet are the most distant part of our nervous system to the brain. It only makes sense that there is a priority system to determine sensation. This is how Neurontin is supposed to work...to block the spinal cord gateways so you don't perceive the pain as much (it may or may not work well, for some people who have different nervous system issues).

Thanks but my pain is arms, lips, much worse than feet or legs. I'll look it up unfortunately those meds do nothing for my pain. I've had MRI of the neck which was fine so not a orthopedic problem.

Another one who can't sleep at night,when I was in nursing school,you saw
that all the time.I feel it's night and and you have to thing of is the pain.

Oh is raining again,we are going to float to CA. Sue