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

[aimee]

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.

[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, 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]

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:

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

[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

[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.