Please Help as I Don't Want to Die, Don't Know What to Do

[OneScaredBuckeye]

Hi and thank you to all who take the time to answer.  I'll keep this as brief as possible.

In April 1998 I noticed I was having some painless fasiculations in my feet, especially after exercise.  I ignored it as they weren't really bothersome and would go away quickly.  Overall, I was relaxed.  

In November 1998, I began to have them all over my buttocks area and sometimes down my legs.  My doctor at the time told me it was "just stress."  I have to admit, I am very, very, very stressed.  (I guess they are fasiculations, they don't seem to be muscle cramps, however I think muscles are affected.)

I have no pain, no limited range of motion, no weakness, no numbness.  No weakness for ten years rules out ALS.  I don't have MS symptoms, either.  I can walk and run fine.  I can cycle on a stationary bike for two hours at a time (but I usually limit it to one), and usually feel better, but I can't put tension on the bike as this causes my symptoms to be worse.  A heating pad will make the symptoms worse, but a hot bath will almost take the symptoms away, but only temporarily.  I can hike in the woods for five miles, up and down hills, and feel a lot, lot better for awhile.  A car ride will usually calm the symptoms down.  One constant is that they worsen with sleep.  Or maybe I just tense up (or whatever) as soon as I wake up.  

If I'm out of the house and relaxed, I don't feel the symptoms at all.  I've never felt them when grocery shopping and I don't even like grocery shopping.  Even when I'm not relaxed, but out of the house, I don't feel the symptoms.  When I went to court to get my divorce (all three times I had to go), I didn't notice the symptoms.  In October I had an echocardiogram and carotid duplex and blood work (all came back fine) and I didn't notice them during the tests or at the hospital outpatient testing area and having tests that may show a problem is stressful, yet I didn't have the symptoms.

My spinal nerves are not impinged.  I have no nerve pain.  I am not allergic to anything in my house.  This started in another house on another continent even.

I am very, very, very scared and depressed and now I've convinced myself that I have some terrible neurological disease.  I was taking Paxil 40 mg. at night and felt a lot better (and also slept well) but I had to discontinue it because it caused uterine bleeding (I had to be one of the rare ones that got that side effect :(  Darn!)  Symptoms didn't go away completely with Paxil, but were much, much better, but I was only on it for two weeks.  I don't want anyone to rule out a physical cause, but I do have PTSD as a result of almost having been murdered in Europe.

With the dreary winter weather and short cold days, I've now convinced myself that I have a terrible, progressive neurological disease and that I'm going to die soon or be terribly disabled.

Could something so physical be caused by emotional stress and anxiety/depression?  I cannot accept that it could, but maybe I need to.  Does anyone have any idea of where I should go from here?

Thank you to all who take the time to answer.  Usually no one answers my posts. :(  

[OneScaredBuckeye]

Yes, sister has OCD (checking, I think) and I notice I have it (counting), but only when I'm greatly stressed.  I think home is just the place where I concentrate on my symptoms most.  Thank you so much for the information.  I hope your looking forward to spring as much as I am.

No, no nerve impingement at all, as ruled out by many, many medical tests.  I don't take vitamin C as a supplement because I have a tiny kidney stone (at least I think it's still there, they told me it was so small I might not even know it when it came out), but I can certainly up my intake of orange juice and other vitamin C containing foods.  I do drink a gallon of water a day as directed by my urologist.  Thank you for the suggestion.

Fasting blood sugar is 87 and blood sugar throughout the day is fine, too.  No diabetes or even prediabetes.  Cholesterol is fine, optimal levels, in fact.

My gynecologist thinks it could be low estrogen as I'm perimenopausal even at thrity-five (well, almost thirty-six) and recommend Amberen.  If that doesn't work, she might try HRT.  My PCP is still insisting it's totally stress and anxiety since they could find no evidence of nerve impingement at all.

Physicians doesn't seem to care much anymore unless we're dying.  And even then, I've known ones who don't care.  But that's not to say there aren't very caring ones out there, just that they're harder to find now.

I will try the hot and cold baths as I know a spa where I can.  Thank you very much for your post.  Have a great week.

[caregiver222]

Yup. Anxiety and stress can do the job. The twitches and problems are probably cause by nerve impingement. That is to say some nerves somewhere are under pressure. The relationship between stress and anxiety and such impingement is simple. Osmolality. That's the key work. Osmolality involves the transfer of fluid into and out of cells and the drainage of the cellular clusters. If osmolality is abnormal there is swelling of the tissue. There has to be a co-factor, which often involves a narrowing of a nerve passageway. The fact that certain types of heat treatment cause momentary improvement suggest strongly that osmolality is the issue. I don't believe you have a "terrible neurological disease". High doses of vitamin C have a diuretic effect, and can often reduce pressure. I might suggest furesomide, but your physician probably won't. Two grams of C and lots of fluid hydration will probably help. You need to get a blood sugar meter and check your blood sugars. Sugar levels affect osmolality. A short period on an anti-flammatory, such as prednisone is often helpful in systemic reduction of swelling, which will break the cycle. Four of five days should do it. I see no evidence you have a progressive neurological disorder (but that is, of course possible). I think it is necessary for you to return to square one, and that requires the intervention of an understanding and intelligent physician. I think there may be one in Brisbane, Australia, unless he passed on. You have classic symptoms of osmolality mediated neurological symptoms. No. That isn't in the Merck. Cheer up. You might try a spa where there are a series of hot and cold baths, which are often helpful.

[turbopassat]

You said in you 12/30 post that "The twitches are very, very annoying.  There have been times when I've just "lived with them," and was able to ignore them for the most part, but I'm under so much stress right now that that seems impossible.  They seem to be consuming my life.  It can turn into a vicious cycle." During one phase of my son's OCD he had a compulsion to clench his buttocks repeatedly.  He was only about 9 years old and he would do this so hard that his lower back would hurt from the arching motion he felt compelled to make.  Eventually he went on to a different compulsion, but they are easier to control when you are distracted or in a new or unfamiliar place.  It seems like home is the place where they are worst.  Does your brother or parents have any OCD symptoms?

[OneScaredBuckeye]

But I do that most of the time and it's a good suggestion.  When I'm out doing things for others I do feel better, but I've spent my whole life so far thinking of others and never me.  My doctor tells me that's part of the problem.  

I spent part Christmas Eve and part of Christmas Day feeding the homeless at a homeless shelter.  I'm a hospice volunteer and a volunteer at my local animal shelter.  I'm involved in many charity events for my church.

Thank you for your suggestion.  Yes, doing things for others does help, but in the end, we always come "home" to ourselves and people like me have to start to realize that they need care as well.

Thank you again and Happy New Year.

[abig]

May I make a suggestion that hasn't been mentioned?  I would suggest getting involved doing something for others that you love and then try to stop thinking about the condition you describe.  This may make it easier to manage.

[OneScaredBuckeye]

Thanks!  I wish I were someplace sunny and right now, 60s would seem hot to me.  Arkansas always looks like a beautiful state in photos.  I've only seen it "for real" from the air. :(  It's hot here in the summer, too, in the 90s and even 100s, but that doesn't bother me.  I love it. :)  And summer doesn't last ten months.  Maybe six.  You're lucky! :)

I have an appointment with my PCP on Friday and I know he'll give me a referral, to a neurologist and maybe to PT as well.  I just hope someone can make the sensations stop.  Not being able to sleep and relax is getting me down and making me feel like I'm living on the ragged edge.

I'm sorry you have epilepsy, Pepper56.  I hope it's under control.  I do use my older brother's GPS, when he let's me, and they are great!

Thanks again.  Just talking with everyone is a big help.

[Pepper56]

I have no medical advice to offer (I am here because I am epileptic), but since you enjoy the outdoors so much, I wanted to make sure you were not missing out on the fun of Geocaching!  www.geocaching.com
You need to invest about $100 in a GPS receiver, but it is a lot of fun if you like to keep active outdoors!

I hope you get your referral and it is productive!

[turbopassat]

Well, if it's sunlight you need, come see me in Arkansas.  We have more than enough.  In fact it was in the 60's on Christmas, but man we fry in the summer (which lasts about 10 months a year!

My prayers are with you, just keep your hope alive.  Even if you can sit in a window with the morning sunlight on your face for 20 minute it might help your mood.

[OneScaredBuckeye]

Thank you for your help and comments.  

turbopassat, I also don't feel the problem after exercise, or don't feel it as much, until I sit down, too.  I know, when I'm very anxious, I do have some OCD.  I feel a compulsion to do things exactly like I did the day before, e.g., the tea kettle has to actually whistle, I feel compelled to count every adjective in a string of them when reading.  When relaxed, or more relaxed, this doesn't bother me at all and I don't feel that compulsion, so the fact that I'm feeling it now tells me I'm very anxious.  I haven't tried light therapy because I currently live with my older brother and he is so frugal even though he doesn't need to be that frugal. LOL  I do dislike winter so very much and feel so good outdorrs and I was so much better in the summer.  This has been the case all my life.  Thank you for your good wishes.  I hope 2008 will bring you all good things.

patsy10, I know.  If you tell almost any doctor how nervous or depressed you feel, it's far too easy for them to put organic things down to anxiety or depression, isn't it?  They tend not to do the necessary testing or give referrals.  Happy New Year to you, too.  I hope it's a good one.

I did use an electric massager on the area last night and this morning when I woke, the muscles didn't seem as contracted and tense, but still bad, and there were reduced sensations in my feet, so that is some improvement.  I just did seventy-five mintues on an exercise bike and while I still feel the muscles "pulling" they aren't as bad as they were a few days ago or even yesterday.  Maybe I am just holding a lot of tension in my buttocks area.  I don't feel particularly tense in other areas, but I do know I'm under so much emotional stress, so maybe I have chronically contracted muscles or perhaps they've formed "muscle knots."

Thank you to all who take the time to comment.  All comments help to put the pieces in place.

Happy New Year to all of you.  I wish all of us and our families health and happiness in 2008 (and always, really).

[patsy10]

I do think seeing a neurologist is important for anyone who has any type of neuro symptom. One suggestion though if you go, don't tell them how anxious you are.  Just tell the doctor your symptoms and let them examine you and make their own diagnosis.  If you tell them you are anxious then they less likely to take you seriously.

The twitches that you can feel but not see are fairly common.  I've had those all my life after exercise.  Even when I was completely well.  Even as a teenager.  I still get those.  The ones that I have all day, every day are visible even to others.  You can put your hand on them and feel them.

[turbopassat]

I experience random muscle "jerks" in my buttocks and down after I do walking exercise for about 30 minutes, but I don't feel them until I stop and sit down.  It does feel very strange.  I also took Paxil, but it caused me to feel like I had exaggerated jerky movements.  Like you go to plant your foot in one spot, but it feels like it doesn't quite want to cooperate. My husband said I would have weird tics and mannerisms at that time.  I was also taking way too much stimulant meds for ADD.  That was the cause.  You mentioned you don't like winter, have you tried light therapy for SADS or asked your Dr. about the possibility.  It seems you feel better on days you get outside and get fresh air and sunlight.  Also, a lot of the things you have explained sound very much like OCD, which is also an anxiety disorder.  My husband and 14 year old son have OCD.  Mostly germs, blasphmy/praying and checking things for safety-locking the door etc.  Twitches and tics can be a release of built up anxiety or compulsions.  Lexapro and Clonipan and Seroquel helps him sleep.  Maybe they should check your hormones with your endocrine. I sure hope you feel better soon

[OneScaredBuckeye]

One strange thing to me is that I cannot see the fasciculations.  I thought in BFS and even in ALS, one could actually see the fasciculations under the skin.  Is this correct?  Thank you.

ggreg, Thank you very much for your comment.  It isn't the bike, though, as the twitches started years before I even had this bike.  I will consider cutting back on the cycling and doing some leisurely walking instead when the symptoms are annoying.  I'm a hiker in the spring, summer, and autumn, but I don't like the cold winters here, though they could be much worse.  (I don't like any cold weather, but it's something most of us have to live with.)  Thanks again.  Any input is always welcome, informative, helpful, and appreciated by me.

patsy10,  Thank you, too.  I don't think these type of symptoms are usually anxiety produced, either, but I've been keeping a journal of when they occur/are worse and they do correlate with anxiety/depression/stress.  I agree with you.  Right now, I think my fear and anxiety is the worst thing.  I'd just like a firm diagnosis.  I'm not at all an assertive person, so when a doctor tells me something, I'm the type to shrug my shoulders and say, "Okay," and then go home and worry.  This time I'm going to be more insistent and insist on a referral to a neurologist.  I don't think he'll find anything abnormal, but I want the referral for my own peace of mind.  Just this morning I was considering myself lucky that I don't have any numbness, weakness, or pain.  When I was able to take Paxil I felt much, much better, so I would say, yes, at least some part of this is anxiety related.

I'm sorry to hear you're suffering from the other symptoms, too, and I hope you feel better, though these things seem to linger, sadly for us.

I hope 2008 brings us all good health and happiness.

[patsy10]

I'm very opinionated in that I don't think these type of symptoms are anxiety produced for most people.  I think they are organic.  However, in your case it sounds like your fear of what you have is far worse than what you really have.  I'm not a doctor but I would have to agree with posters above about the BFS.  I have twitches from head to toe, all day, every day.  I agree they are very annoying and disturbing.  I also have weakness, numbness, severe pain and a host of other things that are too much to list.  If it was just twitches, I could just ignore it.  You get used to it after a while. Anyway, I think if you could rid yourself of the anxiety related to this you would be much better.  I know, easier said than done.  Best of luck to you.

[ggreg]

One thing that really jumped out at me about your feet and leg symptoms is your cycling regimen.  It is possible you need a different bike seat arrangement and/or consider cutting back on how much time you spent doing that.  I know, it's a simple thing, but could be this will help.

[OneScaredBuckeye]

Thank you both for your answers.  I appreciate them very much.

ohioprof, yes, you are certainly right.  The twitches are very, very annoying.  There have been times when I've just "lived with them," and was able to ignore them for the most part, but I'm under so much stress right now that that seems impossible.  They seem to be consuming my life.  It can turn into a vicious cycle.  I very much appreciate your reassuring words and I thank you so very, very much.

JainMD, I've worried a lot about ALS, and I'll mention it to my doctor when I see him next week, but I've had these twitches for ten years now and they are about the same as they always were, in the summer they were even better and I have no muscle weakness at all.  In fact, I've gotten stronger, so I doubt it's ALS in the absence of anything other than the twitching.

I have not seen an endocrinologist, so don't know if I have an endocrine problem.  I feel completely healthy other than the painless twitching.  I'm not fatigued at all, as long as I can sleep and I was sleeping very well until Christmas.  Exercise actually makes me feel better.  It does not fatigue me or cause cramps, etc.  It makes the fasciculations ease up as well.

The most puzzling thing to me is the fact that I can be feeling fine and if I sleep for even fifteen minutes, the twitches are back in full force.  Does anyone know why they would come with sleep when they had eased up significantly when awake only fifteen-to-thirty minutes prior?

Thank you again.

[JainMD]

Hi Katie,
How are you feeling now? You are just 35, that's nice.
Your general anxiety level from your talk appears to be high.
This could be one of the reasons and important one for your twitching. There are other causes for twitching including BFS as mentioned by ohioprof.
Your symptoms could also be suggesting a benign fasciculation syndrome (BFS) apart from GAD, which is a diagnosis of exclusion and it is recognized by twitching of various voluntary muscles in the body. The twitching is most common in the eyelids, arms, legs, and feet.
In addition to twitching, patients with BFS often experience pain, paraesthesia, generalized fatigue, exercise intolerance and/or muscle cramping. Another common feature is an increase in the patient's level of anxiety, especially health-related anxiety.
Other likely causes are motor neuron diseases such as ALS, MS etc must be eliminated before BFS can be assumed.
An important diagnostic tool here is the electromyography (EMG). If EMG is reported normal, than a diagnosis of BFS can be made.
MS has definitive criteria to diagnose, if satisfied then a definitive diagnosis is made.
MRI is diagnostic tool for MS.
Have you got any endocrine problem?
Did you meet neurologist?
Hope this helps you.
Bye.

[ohioprof]

Hello Kate.  Good news: there is nothing wrong with you.  It sounds as if you have classic "Benign Fasciculation Syndrome" . . . otherwise known as BFS.  This is a condition where fasciculations are seen with no apparent reason.  It is a completely benign condition that a lot of people have.  It is absolutely NON life threatening.  The worst thing about it, is that it's annoying.  Oh, and one other thing: stress and lack of sleep make it worse, which I'm going to assume are part of your life right now.  So now I want you to go relax and enjoy your New Year.  You have many years ahead of you.  Take care.

[OneScaredBuckeye]

Thank you for your reply.

My name is Kate and I'm thirty-five.  I'm so scared because I've been given so many diagnoses that have proven to be wrong and it's been a ten-year nightmare.  Now, I can't sleep.

I'm going to my PCP on Monday to see about referrals to rule out anything that hasn't been ruled out.

Thank you again for your reply.

[JainMD]

Hi,
How old are you? What is your name?
Why are you so scared? There is nothing to worry as your entire test has come back normal.
As there is no reason to believe there is an organic cause to it, you should not be scared. I think what you might have is Generalized Anxiety Disorder (GAD).
You should refer to DSM-IV criteria for this disorder and observe whether it fits you or not.
You can consult a psychologist for above mentioned symptoms and also consult a neurologist to rule out any pathology if at all they exist.
Keep me informed.
Bye.