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- Fri Feb 13, 2009 5:53 am
I'm hoping someone can offer some ideas regarding the problem outlined below. All comments welcome. I appreciate you taking the time to read this.
I have severe muscle tension centered in my neck and shoulders, like what you’d experience under intense stress, but much worse. I’m constantly anxious, restless, and agitated. If I try to relax, I experience violent involuntary movements of the head, neck, and limbs while the sensation of restlessness intensifies and surges through my body. Both the sensation and involuntary movements increase in strength until I stop trying to relax. I remain tense when I sleep. I have tension headaches and a dry mouth.
Dopamine boosting drugs (Sinemet, Ritalin, others) make the tension two or three times worse and the involuntary movements somewhat stronger (though not more frequent), but have little effect on the other symptoms.
I get that shaky hypoglycemia feeling and the accompanying headaches, but my blood sugar numbers are in normal range. I’m extremely sensitive to texture and touch; I can only stand to wear shirts made of very smooth fabrics (but I can tolerate rougher fabrics on my legs). I’m normally a very sedate person and couldn’t hurt a fly, but if I’m tickled, I become incredibly agitated and violent. (I don’t have that reaction to anything else; only tickling).
Other problems: Twitches and cramps (mostly in the feet), lower back pain (lying flat hurts), insomnia, fatigue, muscle aches, short-term memory problems, sensitivity to cold, very dry skin with raised red bumps, itchiness, a hiatal hernia, gastric reflux, and an eye disorder that causes my eyes to drift to the side. Also, I seem unusually prone to bad steroid withdrawal.
I once tried a single dose of Flexeril. It permanently lowered my tension and agitation by about 10 or fifteen percent and increased my involuntary movements. I still think about trying it again.
I’m overweight. My blood pressure has never been anything but normal. I don’t drink, smoke, or do recreational drugs.
Tests have shown ferritin at the high end of normal, normal iron, elevated liver enzymes, and higher than normal levels of branched chain amino acids. I had some blood drawn the other day; they’re doing several iron-related tests.
My neurologist considered Restless Legs Syndrome, but turned away from the idea when Sinemet didn’t work.
Feel free to ask for further info.
| John Kenyon, CNA
- Sun Mar 08, 2009 9:32 pm
I'm not sure whether you've been diagnosed with an anxiety disorder or not, or some sort of neurological problem, but there has to be some reason for prescription of dopamine boosting drugs (ritalin, etc.). You're being seen by a neurologist, so there is some reason for that which isn't explicated in your post. There seem to be some issues with tactile sensitivity as well. If you could explain this in more detail it might be helpful, although any dopamine-enhancing drugs are only going to make pre-existing agitation, nervousness, tension, etc., only worse. This is the nature of dopamine and these drugs. The question becomes: why would you take medications which are known to aggravate the sorts of symptoms you have? This remains something of a mystery. I don't see anything specific to any of this in your history.
If you could give us some more information we mght at least be able to refer your post to the appropriate team here.
Good luck to you. Hoping to hear more from you so we might be able to help.
- Tue Mar 24, 2009 11:37 pm
Thanks very much for the reply.
1. "I'm not sure whether you've been diagnosed with an anxiety disorder..."
I do experience anxiety and have seen a psychiatrist about it; he prescribed Gabapentin. I'm not sure he ever made a formal diagnosis. Gapentin, like valium, and opiates (the last of these I take occasionally for headaches) only take the edge off the muscle tension and don't have much of an effect on the restlessness or involuntary movements.
2. "or some sort of neurological problem....You're being seen by a neurologist, so there is some reason for that"
Sorry; tried very hard to keep the post (relatively) short, so some details did get left out. I do have a diagnosis of cervical dystonia for the muscle tension in the neck. I see the neurologist for botox injections. He has no idea what causes the involuntary movements or the restlessness.
3. "... there has to be some reason for prescription of dopamine boosting drugs.."
They're just a few of the many treatments I've tried over the years. I only took one or two doses before realizing they were making the problem worse. I mentioned them because it seems like everything I read about restlessness emphasizes the role of dopamine. I figured it would be the first thing to pop into your mind. Also, I was under the impression that my reaction to these drugs was fairly unusual and thought it might mean something.
4. "There seem to be some issues with tactile sensitivity as well. If you could explain this in more detail it might be helpful"
First, my skin is extremely dry (as is my hair) and there are tiny raised, reddish bumps all over my arms, legs, and torso. Several doctors have commented on them, but none know what they are. They look kind of like goose bumps. As for the sensations, themselves... I am extremely sensitive to textures and to a few other things. I mentioned that I can't wear most shirts; they're too rough. They're scratchy like burlap and prickly like hay.They itch horribly and make me even more tense and agitated. Similarly, I hate walking barefooted on carpet; it causes a milder version of a nails-on-a-chalkboard feeling. When i sit at my desk, I use a worn, smooth t-shirt as a floor mat.
One time, not long after I first started having these symptoms, I was talking online to a friend about something that had upset me quite a bit. I got very agitated and suddenly couldn't stand to have anything touching my skin, so I took all my clothes off. That only ever happened once. However, I generally hate wearing shoes and go barefoot at every opportunity (though never outside, as I also hate the feeling of dirt on my feet). I also don't like my feet to be under the blanket when I'm in bed, even if it's very cold. I'm very susceptible to itches all over my body and scratch frequently throughout the day. I keep a back scratcher in my car and one by my bed. I have a rash of some kind on my scalp and on either side of my nose. I use triamacinilone on my face and a lot of zinc pyrithione (2%) shampoo on my scalp. I'm very sensitive to sunlight. I can't drive during the day without sunglasses.
I hope I answered your questions. Please let me know if I can fill in any more blanks.
| John Kenyon, CNA
- Fri Mar 27, 2009 9:57 pm
Hello again, and thanks for the painstaking clarifications. I don't know that it helps ultimately, but it does certainly round out the picture, which is extremely complex.
While I've not heard of gabapentin being used to treat anxiety, it may be that it would have something of a sedative effect and help with the involuntary movements at the same time. Normally I'd second-guess this tactice, but because of the extreme complexity of your situation and the probability that anxiety is only a part of it, I have to say it does make sense.
The fact that you suffer from cervical dystonia should, at least, provide some additional clue to the underlying cause of the many problems. It may be closer to the source, actually, but I'm not at all certain what that may be as yet.
I think where the dopamine is concerned, it may have been a shot in the dark that didn't work out. I would have assumed it to cause the very problems it did seem to cause, so that's not a surprise and is, at least, a normal response. I'm glad you've D/C'd it now.
The peculiar aspects of tactile hyersensitivity suggest to me an origin central in nature, perhaps some malfunction in the brain itself, perhaps caused by a lesion or overdevelopment of some part. This is, frankly, beyond the scope of my experience and training, and I am going to refer it to the neurological tem here in hopes we can find someone who might be able to advance a comprehensive theory about this. Please check back here in a day or two and see what may have turned up. Meanwhile, hang in there, and know your addtional information here should be a big help. I certainly hope so.
| Brenda Jones, RN
- Sat Mar 28, 2009 3:49 am
Wow! John referred me to your case. Hopefully I'll be of some help. Let me start by saying that you should see a Rheumatologist if you're not already. Your symptoms are complex and I feel that they are caused from various things, not just one disorder.
Sinemet is a dopamine booster that is prescribed for neuromuscular disorders such as cervical distonia. A side-effect of this drug can be parkinsonism which causes the symptoms you described. Ironically, many patients respond to agents which block or deplete dopamine. Many of these drugs are such as antipsychotic agents like Clozaril® (clozapine), Nitoman® (tetrabenazine), or Reserpine®. You might want to inquire about these drugs with your Doctor since the dopamine booster didn't work out.
Let me also say that Gabapentin is great for peripheral neuropathy. I know you stated that it didn't work for you the first time around but you and your doctor could experiment with the dosage and frequency and see if that helps. Clonazapam may be beneficial to you as well.
I noticed that you take Magnesium for Fibromyalgia. Our bodies like the ratio of Magnesium and Calcium to be 3:1. Too much Magnesium and not enough Calcium can cause hypocalcemia(low calcium) symptoms. Hypocalcemia symptoms can range from tetany(muscle twitches) to dermatits(skin rash). Check into hypocalcemia and see if these symptoms ring a bell. A calcium supplement might do the trick.
Don't rule out alternative therapies. Some people swear by chiropracty and accupuncture. They could alleviate some of the symptoms you're suffering from.
Best of luck Clay and let me know if you have any questions about anything I've said.
| Faye Lang, RN, MSW
- Sat Mar 28, 2009 2:18 pm
Has the neurologist tested your ANA (antinuclear antibodies)? Your symptoms very much resemble rheumatologic disease, and you already have had one identified - the Fibromyalgia. It is imperative that certain diagnoses are considered and ruled out, namely Muscular Sclerosis, Lupus, Dermatomyositis (which is what it most resembles) and mixed autoimmune disease. I suggest seeing a rheumatologist and ask for screening for the conditions I have listed. Furthermore, the stress of coping with your symptoms is a strong factor. If the rheumatologist is unable to identify a specific disease, you would benefit from stress relief treatment which should be available at your local Mental Health clinic. Actually, evaluation by a psychologist may be beneficial as some of your symptoms resemble those of Tourette's Syndrome or a related condition. I do not mean to criticize the doctors that you have seen, since no doctor can know all things about all conditions. However, don't hesitate to see a second or even third opinion.
I hope this helps to lead you to relief of your symptoms.
Faye, RN, MSW
| Andrea Schulz, LCSW
- Sat Mar 28, 2009 8:31 pm
Your symtoms are:
severe muscle tension in neck and shoulders
anxious, restless, and agitated
violent involuntary movements
abnormal eye movement
red spots on skin
hx of pyloric stenosis as an infant
hx obstructive sleep apnea treated by surgical removal of obstructions
I'm requesting more information and have some ideas to explore further with your primary care physician.
Have you had a sleep study recently or since your surgeries to remove obstructions?
Do you wear C-PAP, Bi-PAP, Auto-PAP?
Have you had your nitric oxide, ESR, C-reactive protein and blood oxygen levels checked recently? If so, what are the results?
Possible diagnoses to rule out:
Your skin condition may be a form of psoriasis called guttate, which appears as small red spots on the skin.
Psoriasis is an overgrowth of skin cells caused by autoimmunine dysfunction. Research has also linked psoriasis to increased risk of cardio-vascular dysfunctions.
Pyloric Stenosis is an overgrowth of muscle cells in the stomach of infants causing blockage. One theory is that it is caused by problems recognizing, absorbing or producing nitric oxide, which signals the cells to stop growing. Maybe there is a connection between the two autoimmune disorders, and maybe that connection is nitric oxide.
Research indicates a link between psoriasis and fibromyalgia.
People with sleep apnea have lower levels of nitric oxide in their exhalations. Presumably this is because they are inhaling less due to apneas and hypoapneas. Or they may be unable to utilize the nitric oxide due to lower rates of oxygen in the blood stream, which would also cause nitric oxide to build up in the blood stream.
A low rate of blood oxygen levels causes inflammatory disorders, auto immune disorders, insulin resistance, and places stress on the heart, which has to work harder.
Insulin resistance causes hypoglycemia. One can have hypoglycemia without having abnormal blood sugar levels, because it takes awhile for insulin resistance to develop to the point of active diabetes.
Insulin resistance and diabetes result in vascular damage, including strokes, neuropathy related to poor circulation, restless legs related to poor circulation, and "strokes" in the eye resulting in vision impairments.
In some cases, surgical removal of airway obstructions to treat sleep apnea can result in the obstructions growing back or overgrowth of scar tissue. If you have psoriasis (nitric oxide imbalance), maybe it could also cause skin cells to grow back in your palate and airway even after surgical removal.
Imbalances in nitric oxide and dopamine have been implicated in development of extra-pyramidal symptoms (EPS) such as dystonia, parkinsonianism, akthisia, neuroleptic malignant syndrome and tardive dyskensia, etc. EPS would explain the muscle stiffness in your neck and your involuntary movements.
Nitric oxide imbalance has also been implicated in developing autoimmune-induced hepatitis.
Sleep apnea and the resulting lack in oxygen in the blood stream may cause symptoms of executive functioning in the brain. Executive functions include regulating moods, memory, aggression, impulse control, judgment,concentration and attention.
So....I'm wondering if something (such as sleep apnea) may be impairing your blood oxygen and nitric oxide levels, resulting in a cascade of health problems.
I'm very curious to find out more, it is quite a puzzle. It sounds like you have struggled valiantly your entire life with chronic and painful health conditions with not a lot of definitive answers, just interventions (like botox) to reduce symptoms.
BTW, dopamine causes restlessness and agitation in most of us, but for people with ADHD/ADD and depression, dopamine can alleviate symptoms. I've seen many adult clients who abuse methamphetamine (a stimulant in the same class as ritalin and adderall) look calm while under the influence, and then upon completing drug treatment, start to behave as if they were on meth, instead of clean. They often have a childhood hx of untreated or inconsistently treated ADHD. Children with undiagnosed sleep apnea caused by tonsils and/or adenoids, are frequently diagnosed with ADHD and behavior problems which resolve once their tonsils are removed.
| Dr. E. Seigle
- Sun Mar 29, 2009 9:34 am
Mr. Kenyon has referred your posting to me; I am a psychiatrist, and will respond to you posting from that perspective. It sounds like your neurologist has approached the problem with the focus on muscle tension and restlessness, treating you for restless legs syndrome. I would suggest that you be evaluated for a possible Anxiety Disorder, of which prominent parts are often muscle tension, tremors, and of course, anxiety.
It would be helpful to know what kinds of problems with worrying, physical symptoms associated with anxiety, and if you have any behaviors that you need to do repetitively, or thoughts that you have trouble stopping from thinking about. These would help look at the possibility of an anxiety disorder. Also, do you have any history of very frightening or very upsetting events, stresses, losses? Any experiences of violence, accidents, or other traumas?
To summarize, it sounds like you might benefit from being evaluated by a psychiatrist for a possible anxiety disorder, including Generalized Anxiety Disorder,
Panic Disorder, Post Traumatic Stress Disorder, Adjustment Disorder with Anxious Mood, and Anxiety Disorder- unspecified type, and others. A good general psychiatric evaluation with special focus on anxiety may be quite helpful, and then provide suggestions for treatment.
Let me know if you'd like to speak further about this.
-E. Seigle MD
| Joanna H, RN-BC
- Thu Apr 02, 2009 7:31 pm
Dopamine is a very complex chemical in the body. There are certain disorders where dopamine levels can either be altered by the body itself, or by certain medications that can alter those levels. For instance, in Parkinson's Disease dopamine levels in the body are surpressed causing the symptoms associated with Parkinson's disease such as the shaking, muscle weakness, sometimes muscle ridgidity. Also, there are psychiatric medications which have a "dopamine blocking affect" that will also lower the body's dopamine levels causing "Parkinsonian like" symptoms of the same. One of the symptoms includes a condition called "torticollus" which is a stiffening and/or turning of the neck. It can also include feeling like your head is being pulled down, or tucked down in to your neck creating more aches, pain and stiffness. Often when caused by either an illness such as Parkinson's disease, or by side effect of a medication causing levels of dopamine to decrease there is also a change in the level of acetylcholine which is another type of chemical in the body affecting nerve transmission. Often with a change in dopamine levels there is also a change in the actylcholine levels which can also cause some of the symptoms you are describing. I would check further with your doctor about these chemicals and if this could be applicable to you. I also would advise you to consult with your physician about the dosage of dopamine you are receiving. Very often taking dopamine such as L-Dopa type drugs need to be "fine tuned" in their dosing levels.