Nerve Damage, Poor Circulation, or What?????

Two years ago I began having strange shaking sensations in my pelvic and sacral areas.  When I would close my eyes to sleep, I would feel like I was swinging back and forth.  I was later told I had had an inflammation caused by sitting in the same position for many many hours and not moving around and that now the skin was "stuck" to the underlying bone and muscle and tugging on the nerves.  I had a series of seven cortisone injections.  All tests were normal, except a slight anemia--eleven.  I could get the shaking to stop if I moved around enough during the day but as soon as I sleep--there it is again.  When I first wake, it feels like a pulse on my tailbone, only very strong.  One hour on an exercise bike or an hour's walk and I feel better, only to have it come with sleep again?  I have a little pain in the area, but the pain feels like it's in the skin--nothing bad, though, and the pain does increase with movement.  Do you have any idea about what this could be?  I, myself don't believe I ever had an inflammation.  I do not feel normal pain and discomfort and did sit in one position for up to twenty hours per day.  It definitely seems to be something to do with circulation and nerves though.  Could it possibly be psychosomatic?  I have been under stress.  Any help or direction you could give would be very appreciated.  Thank you.

[CCF Neuro[P] MD, RPS]

Dear Aimee:

Sorry to hear about your shaking.  I really doubt that it is inflammation.  It might be several things, restless leg syndrome, low B12, etc.  What you need to do is to see a good neurologist and get a good examination, some lab work and see what he/she says about your condition.  I am sorry that it is so difficult to give you more information, but without examining you the internet does not allow a very good medium for diagnosis. There is always the possibility that it is psychosomatic, but rule out the other stuff first.

Sincerely,

CCF Neuro MD

[Decus]

I am a 33y/o male having prolapsed disc at L5/S1 which caused serve pain in my left leg for about a year. I went through disectomy  on 10/Dec,99 . Everythings fine but 20 days later, I started to experience numbness and mild pain in both legs. On 20,Jan,00, I have anther MRI which show imflamed s1 nerve  roots and a lot of imflamed post-surgical tissues. My doc told me that's the casue of my feeling on both legs. By then, My doc told me to do PT and I follow. After a week of PT, 27/Jan, I started to have some feeling of urinary urge. This lead to ejectculation at nite, 2 times. I stopped PT but my doctor told me not to worry and this is a response from PT.


        My question are:

        1. Do S1 nerve roots related to bladder control?
        2. Do you think inflame on S1 nerve can casue that?
        3. if 2 is yes. how long to get it settle down?
any estimation?

        I am now offered NSAID, LODINE 400mg, but it only help my legs but not on my urinary urge feeling.

        Jim

[Decus]

I am a 33y/o male having prolapsed disc at L5/S1 which caused serve pain in my left leg for about a year. I went through disectomy  on 10/Dec,99 . Everythings fine but 20 days later, I started to experience numbness and mild pain in both legs. On 20,Jan,00, I have anther MRI which show imflamed s1 nerve  roots and a lot of imflamed post-surgical tissues. My doc told me that's the casue of my feeling on both legs. By then, My doc told me to do PT and I follow. After a week of PT, 27/Jan, I started to have some feeling of urinary urge. This lead to ejectculation at nite, 2 times. I stopped PT but my doctor told me not to worry and this is a response from PT.


        My question are:

        1. Do S1 nerve roots related to bladder control?
        2. Do you think inflame on S1 nerve can casue that?
        3. if 2 is yes. how long to get it settle down?
         4. how long, any estimation, for the imflamed nerve root to recover?

        I am now offered NSAID, LODINE 400mg, but it only help my legs but not on my urinary urge feeling.

     decus

[aimee]

I really appreciate the fact that you're having a problem, but you need to get your own thread.  I know it's hard to post on this forum--I had to wait about one year, but this is MY thread.  Please don't use it for your own questions and change the subject.  Thank you and I hope you feel better.

[Aimee to CCF Neuro]

To CCF Neuro

I am sure it's not restless leg syndrome.  I exercise about three or four hours per day and feel fine.  When I lay down to sleep, I don't feel the urge to move my legs or walk around.  In fact, I feel pretty good until I sleep.  If I fall asleep for just five or ten minutes the shaking, popping, etc. is back and it will not leave until I exercise for at least one hour again.  I forgot to mention in my original post that one year ago my former doctor told me to use ice on the area--as much as needed.  I used ice all day for two months before I found out this could be harmful.  Could this have anything to do with the problem?  Could the ice have harmed the tiny sensory nerves or the tiny capillaries in the skin so they can't dilate properly?  Unfortunately, I live in Europe and cannot see a neurologist or any other specialist without a referral from my GP.

[steve]

Hi Aimee,

Sure sounds like a circulation problem to me and did you know that poor circulation can cause the nerves to shake--they are undernourished!

Since you can feel the shaking, my guess would be that the circulation problem is only in the superficial capillaries and not the deeper veins and, although it is very annoying, it would not be dangerous.  

Exercise might initially make you feel rotten (i.e., more shaking) but it is the only thing that will bring more blood and nourish those nerves!  And as the Neurologist says, B12 is good.  It's water-soluble, by the way.

If it were me, I'd exercise like crazy.  Hope I've helped and good luck!

Steve

[CCF Neuro[P] MD, RPS]

Dear Aimee:

Restless leg usually only occurs as you sleep.  Since your so sure it is not restless leg we will leave that thought.  I am not sure what you have.  The ice will usually not cause long term damage.  I would not think that your symptoms can be blamed on ice.

Sincerely,

CCF Neuro MD

[Aimee to CCF Neuro]

Now that I know restless leg only occurs during sleep, I think that could be it.  At least I'm not sure it's not anymore.  I was mistaken in thinking it occurred at bedtime when the patient was awake.  But can restless leg occur in the buttocks and on the coccyx?  That's where my shaking is.  I always wake with this shaking and exercise helps.  It can be like a pulse or just shaking.  I don't feel the need to move, but moving helps.  Sometimes it feels like corn popping under my skin and I can actually feel it with my hand.  Thanks for letting me know about the ice--I won't think about that anymore.  Could it be circulation though?  I may have forgotten to say that whatever I feel in my pelvic and sacral areas, I feel in my feet.  When the pelvis is quiet, the feet are quiet.  It is really miserable and my doctor has given up and says it must be psychosomatic because tests are normal, however I've never had a psychosomatic problem before and no history of psychiatric problems in my life.  I feel sure it's not psychosomatic.  The skin is very sore, but no redness, etc.  Looks fine.  The soreness is diminishing VERY SLOWLY.  Since I've had this two years, I'm not afraid of it being fatal but it makes my life miserable and has destroyed my marriage.  (Husband believes I'm just making it up, but no way)  THANK YOU for the new information about restless leg.  If you know of any specific tests you could recommend, I'd appreciate it.  I know it's tough on the Internet, but when doctors give up, we only have you to turn to and thank goodness you are there giving us some direction.  Have taken up enough of your time.  Thanks for any direction you could give me.  I asked about the tests because if I go to my GP and request a specific test, she will probably do it.  Thanks.

[CCF Neuro[P]MD, RPS]

Dear Aimee:

Yes, what you describe could be restless leg.  I would see a neurologist and get their opinion as they can do a good physical exam.  Radiating symptoms can also be from a nerve root.  But, the occurance at night would be unusal but certainly not unheard of.  If it is restless leg, it would respond with L-dopa analogues, carbamazepine, or benzodiazepines.

Sincerely,

CCF Neuro MD

[Aimee to CCF Neuro]

THANK YOU--I feel better, mentally, already.  After two years, maybe I know what I have--restless leg syndrome.  May I ask--would a nerve root problem come and go?  Feel wretched some of the time and fine some of the time?  Thank you SO much!

[CCF Neuro[P ]MD, RPS]

Dear Aimee:

Yes a nerve problem could come and go.

CCF Neuro MD

[Lots of Exercise comment]

You excercise 3-4 hours per day?!? I have been told by one of the top neuromuscular specialists in the country, head of the MDA Clinic in San Francisco and Chairman of Neurology there,  that twitching and "over active" muscular activity - 2 most common causes are 1) over exercise and/or 2) muscles that can't relax fully.

I have twitching, shakiness under the skin, "creepy crawly" feelings under my skin and nerve irritation for over 8 months now...when I run 30 minutes on the treadmill I feel great during it, but I know that I WILL pay a little higher price post workout in that all my symptoms are worse...I deal with it because the exercise is important to me...but 3-4 hours per day seems excessive and may be causing your problem, or at least exacerbating it.

Just a thought.

[Aimee To Lots of Exercise]

Thanks so much for your comment!  I will reduce my exercise time and see if this helps because I have the exact same symptoms as you.  Thanks again!  Will let you know how it works out.

Aimee

[Aimee To Lots of Exercise]

Thanks so much for your comment!  I will reduce my exercise time and see if this helps because I have the exact same symptoms as you.  Thanks again!  Will let you know how it works out.

Aimee

[Aimee To Lots of Exercise--Again]

I was thinking about what you wrote and it may be causing my problem.  Like you, I feel great WHEN I'm exercising--completely normal.  It's when I'm STILL that I have my problems.  It does feel like nerve irritation or like popcorn under the skin.  Mine gets a LOT worse when I sleep, no matter how I felt during the day.  Don't know if you experience this or not.  If you read this again, could you let me know?  I'm not really an exercise nut--30 to 45 minutes perday would be enough, but I exercise so much because that is the only time I feel really good--no irritation, etc.  I have been tested and they can't find anything wrong, so I will cut the exercise way back.  Thank you very much!

[CCF Neuro[P] MD, RPS]

thanks for talking to one another.

CCF Neuro MD

[Lots of exercize again]

Hiya, yes exactly - here is the rub with this. It affects me mostly at rest. I have no problems when exercizing or when being active...it is when I am quietly working in my office or kicking back at night at the end of the day is when it seems to be the most bothersome. Also, worrying about it, which I did much earlier in this 8 month process, did not help either. I kind of have finally let it go - after a couple of normal neuro exams from very competent guys - and that helped, too. I think lots of folks get themselves caught in a cycle of diagnosis where they become obsessed with it and can't HEAR their professionals any longer.

Just to give you a bit of history, this all started in a very stressful period in my life - I moved to another state, bought my first house, got a new boss, moved my offices, etc... all in a one month timeframe. I also had severe back pain, that I was very worried about because I have never which I was being worked up for, and then out of the blue this twitching - more muscle "flutters" is what I call them as they usually are more than 1 in a sequence in the same place, creepy crawly feelings, feeling irritated UNDERneath my skin, pains here and there (no cramping just little pains and burning), vibrating, tingling, etc... I think maybe a virus just irritated my nerve system and this is the residual from that.

Drink lots of water, stay away from caffeine, gets rest and don't stress. Also, seek out a neuromuscular specialist - easiest way is to call information and find out the number for the MDA clinic in your area. Schedule your appointment with them...you'll probably have to wait about 1 month, but it is worth it. These guys deal daily with the more sinister illnesses that cause some of our symptoms so they will be able to assess what is happening with you with the greatest of expertise. In the absence of weakness, or muscle atrophy and/or noticeable muscle loss like clumsiness, etc... you are probably just suffering a benign nerve irritation.

[kevin kelly]

18 months ago i had an anterior submuscular transposition done on my right ulna nerve due to compression. the problem still has not been corrected. Recently i've been diagnosed with mononeuropathy multiplex. I have a very complicated elbow due to professional armwrestling. My question to you is there any way to locate the compression with out further surgery? also a nerve conduction velocity test or inching method was done recently, still no luck. What exactly is mononeuropathy multiplex and the treatments involved?

[kevin kelly]

18 months ago i had an anterior submuscular transposition done on my right ulna nerve due to compression. the problem still has not been corrected. Recently i've been diagnosed with mononeuropathy multiplex. I have a very complicated elbow due to professional armwrestling. My question to you is there any way to locate the compression with out further surgery? also a nerve conduction velocity test or inching method was done recently, still no luck. What exactly is mononeuropathy multiplex and the treatments involved?

[Aimee to Lotsof Exercise again]

Saw the neuromuscular specialist and he said I had irritated nerves, from what he was not sure, but they were simply little sensory nerves in the skin and muscle sheathing.  The spinal nerves are fine and there is no inflammation, etc.  He said I could go on and do whatever I wanted to do--exercise, etc., said I could irritate it but would not hurt it and that it WOULD go away in time--how much time, he could not say either.

Mine also came during a period of high stress and I find when I worry, I, too am worse. I have the EXACT same symptoms the vibration, creepy crawling feelings, etc. and they are under the skin.  But I get on a mountain bike or treadmill and I don't feel them at all.

I can fall asleep because I am dead tired at the end of the day but relaxing is tough--then it just gets worse.

I, too, have never had muscle weakness, atrophy, numbness, clumsiness, etc.  I suppose the best is not to get obsessed with it and just forget it, but as you know that's hard when it feels so lousy.

Thank you for sharing your symptoms and a some of your history.  I know you made me feel a lot better and who knows how many others out there we don't know about?  Thanks again.

[Karen]

I am a special needs bus driver.  For 11 years I have pivoted primarily on my right leg to get out of my seat.  I also use my right leg to hold me while I strap down wheel chairs.  I drove a bus to substitute for a regular route driver.  The bus seat would not go forward enough, or down enough to properly reach the gas or brake pedals.  I hurt my sacral area.  I then was instructed to drive again, substitute, about a month later. I used another bus that was not as bad , but was not adequate enough for me to reach the pedals.  I have been to the Doctor, but they want to adjust me.  I thing that, adjusting may help, but there is nerve damage also.  When I roll my hips back and for to help relieve the pain, my back/hip area pops.  If I do not pop it back then my left foot gets a bruise on it.  When it pops back the bruise goes away.  When my left foot is bruising I can barely walk.  I feel pain down both legs and at night I feel like pins and needles are poking my feet and fingers.  What could this be?  
  
Thank You,

  Karen

[Christie--To Aimee]

Hi Aimee--I had the same symptoms as you and mine turned out to be adhesions or adherent tissue.  I had irritated nerves and a problem with circulation as well as varying degrees of pain.  I, too, tried everything and nothing worked until I began cross-muscle massage.  This finally separated the adherent tissue and to date, it has not come back. It takes a while to work, though--maybe two weeks before you notice any improvement at all.  I hope it will help you and good luck!!!!!

Christie

[Aimee to CCF Neuro]

This does have to do with my problem--I think I have developed adherent tissue in the pelvic and sacral areas.  I would like to know--does circulation in the capillaries near the surface of the skin diminish with sleep?  Thank you very much.  Aimee

[CCF Neuro[P] MD, RPS]

Dear Aimee:

The answer to your question is no.

CCF Neuro MD

[Aimee to CCF Neuro--Please Help]

I saw a new doctor who described my problem as this--I do not feel normal everyday pain and discomfort--for example, I have never taken xylocaine, etc. at the dentist even though I have crown and bridge work--did not even need it to have a wisdom tooth pulled.  I sat wrong for a very long time, constantly putting pressure on the left side of my posterior (I have a slight scoliosis).  Now I'm told the pressure has inflammed the little sensory nerves and impaired the circulation.  I'm supposed to exercise and not put so much pressure on my rear.  But I feel as though I'm sitting on a vibrator all the time.  I can actually FEEL the blood flowing sort of like a low hum or vibration.  No pain, though, but maybe I just don't feel it.  My doctor says it's not serious and takes little interest but it just about drives me crazy.  I know you have not examined me, but hypothetically, let's say unrelenting pressure was put on my rear and impaired the circulation in that area only.  If that is truly the case, what do you think is the best thing to do?  And howq does one deal with the vibration all the time?  It's driving me nuts!  Thank you very much.

[CCF Neuro[P] MD, RPS]

Dear Amiee:

I do not know the answer to your question.  I suppose that it is possible.  However, I would imagine that you would have other areas of problems as we all tend to lean areas that can cause pressure palsies.  Since you do not describe any of these, I would tend to put questions about the diagnosis.

CCF Neuro MD

[Pat]

At times my feet feel they have gone to sleep kind of numb.
they get so cold i have to sit in the tub to warm them up.
any ideas what it could be?
                    Thankyou,
                           Pat

[pamraff]

A related discussion, Broken Ankle Recovery - Nerve Damage? was started.