Tremors In Lupus Patients
To start this post, I find it is important to describe what the definition of tremor is. Here is the definition from wikipedia:
A tremor is an involuntary,[1] somewhat rhythmic, muscle contraction and relaxation involving to and fro movements (oscillations or twitching) of one or more body parts. It is the most common of all involuntary movements and can affect the hands, arms, eyes, face, head, vocal folds, trunk, and legs. Most tremors occur in the hands. In some people, tremor is a symptom of another neurological disorder. A very common kind of tremor is the chattering of teeth, usually induced by cold temperatures or by fear.
This would seem to be a complete definition but the things I experience do not necessarily fit into this tight definition. I do experience hands shaking, sometimes lip quivering, and muscle twitches at times. The shaking I get that drives me bonkers is where it feels like the whole inside of my body is shaking and it may or may not show in my hands or other body area. It is quite frustrating and scary. It makes me stop whatever I am doing and have to try to lay down and rest to relax my body. It does not seem to be anxiety related either. It cans trike me at random and is puzzling and frightening. So, as I usually do, I thought I would research this out too.
Amazingly, I found not one shred of medical information regarding this, other than others who have had this experience. I usually find things on medical boards or places like medline or webmd but not in this instance. It made me wonder if any of you have had this happen to you too.
I know I saw quite a few others asking this same question as well. I know I am not alone in this. It just may take some time until more is known in the realm of medical professionals for me to find anything online.
Neurological Symptoms of Lupus
I got this information from the website below. I found it short and sweet. I have neurological minifestations from lupus and therefore this interests me. I thought maybe you all would like it too.
From: http://www.ninds.nih.gov/disorders/lupus/lupus.htm
What are Neurological Sequelae Of Lupus?
Lupus (also called systemic lupus erythematosus) is a disorder of the immune system. Normally, the immune system protects the body against invading infections and cancers. In lupus, the immune system is over-active and produces increased amounts of abnormal antibodies that attack the body’s tissues and organs. Lupus can affect many parts of the body, including the joints, skin, kidneys, lungs, heart, nervous system, and blood vessels. The signs and symptoms of lupus differ from person to person; the disease can range from mild to life threatening.
Initial symptoms of lupus may begin with a fever, vascular headaches, epilepsy, or psychoses. A striking feature of lupus is a butterfly shaped rash over the cheeks. In addition to headache, lupus can cause other neurological disorders, such as mild cognitive dysfunction, organic brain syndrome, peripheral neuropathies, sensory neuropathy, psychological problems (including personality changes, paranoia, mania, and schizophrenia), seizures, transverse myelitis, and paralysis and stroke.
Is there any treatment?
What is the prognosis?
What research is being done?
Investigators researching lupus seek to increase scientific understanding of the disorder and to find ways to treat, prevent, and ultimately, cure it. Several components of the National Institutes of Health support research on lupus
Periphreal Neuropathy Treatment and Drugs
Part 8 in this series from the Mayo Clinic
Treatment and Drugs
Treatments and drugs
One goal of treatment is to manage the condition causing your neuropathy. If the underlying cause is corrected, the neuropathy often improves on its own. Another goal of treatment is to relieve the painful symptoms.
Medications
Many types of medications can be used to relieve the pain of peripheral neuropathy, including:
- Pain relievers. Mild symptoms may be relieved by over-the-counter pain medications. For more-severe symptoms, your doctor may recommend prescription painkillers. Drugs containing opiates, such as codeine, can lead to dependence, constipation or sedation, so these drugs are generally prescribed only when other treatments fail.
- Anti-seizure medications. Drugs such as gabapentin (Gralise, Neurontin), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek) were originally developed to treat epilepsy. However, doctors often also prescribe them for nerve pain. Side effects may include drowsiness and dizziness.
- Capsaicin. A cream containing this naturally occurring substance found in hot peppers can cause modest improvements in peripheral neuropathy symptoms. Like spicy foods, it may take some time and gradual exposure to get used to because of the hot sensation this cream creates. Generally, you have to get used to the heat before you can experience pain relief. Doctors may suggest you use this cream with other treatments.
- Lidocaine patch. This patch contains the topical anesthetic lidocaine. You apply it to the area where your pain is most severe, and you can use up to four patches a day to relieve pain. This treatment has almost no side effects except, for some people, a rash at the site of the patch.
- Antidepressants. Tricyclic antidepressant medications, such as amitriptyline and nortriptyline (Aventyl, Pamelor), were originally developed to treat depression. However, they have been found to help relieve pain by interfering with chemical processes in your brain and spinal cord that cause you to feel pain. The serotonin and norepinephrine reuptake inhibitor duloxetine (Cymbalta) also has proved effective for peripheral neuropathy caused by diabetes. Side effects may include nausea, drowsiness, dizziness, decreased appetite and constipation.
Therapies
Transcutaneous electrical nerve stimulation (TENS) may help to relieve symptoms. In this therapy, adhesive electrodes are placed on the skin, and a gentle electric current is delivered through the electrodes at varying frequencies. TENS has to be applied regularly.
Periphreal Neuropathy Tests and Diagnosis
Part 7 pf this series from the Mayo Clinic website
Tests and Diagnosis
Tests and diagnosis
Peripheral neuropathy isn’t a single disease, but rather a symptom with many potential causes. For that reason it can be difficult to diagnose. Your doctor will need to determine where the nerve damage is and what’s causing it.
Diagnosis usually requires:
- A full medical history. This includes your symptoms, your lifestyle, exposure to toxins, drinking habits and a family history of neurological disease.
- Neurological exam. This may include checking your tendon reflexes, your muscle strength and tone, your ability to feel certain sensations, and your posture and coordination.
- Physical exam. Your doctor will likely do a complete physical exam.
Your doctor may order tests, including:
- Blood tests. These measure various levels, such as vitamin and blood sugar levels; and bodily functions, such as thyroid, liver and kidney.
- Imaging tests. Your doctor may request a CT scan or MRI to look for herniated disks, tumors or other abnormalities.
- Nerve function tests. These may include electromyography — which reads electrical activity in your muscles to determine if your weakness is caused by muscle damage or nerve damage — and nerve conduction studies — which assess how your nerves and muscles respond to small electrical stimuli, generated by a probe and measured by an electrode placed along the nerve’s pathway.
- Nerve biopsy. Your doctor may recommend this procedure to try to determine what’s damaging your nerves. A small portion of a nerve is removed and examined for abnormalities.
Periphreal Neuropathy, Preparing for Your Appointment
Part 6 of this series from the Mayo Clinic website.
Preparing for Your Appointment
Preparing for your appointment
You’re likely to start by seeing your family doctor or a general practitioner. However, you may then be referred to a doctor who specializes in nervous system disorders (neurologist).
To make the most of your appointment time, it’s good to arrive prepared. Here’s some information to help you get ready for your appointment, and to know what to expect from your doctor.
What you can do
- Write down any symptoms you’re experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Make a list of all medications, vitamins and supplements you’re taking.
- Ask a family member or friend to come with you, if possible. Sometimes it can be difficult to remember all of the information provided to you during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your doctor.
Preparing a list of questions can help you make the most of your time with your doctor. For peripheral neuropathy, some basic questions to ask your doctor include:
- What’s the most likely cause of my symptoms?
- Are there other possible causes for my symptoms?
- What kinds of tests do I need? Do these tests require any special preparation?
- Is this condition temporary or long lasting?
- What treatments are available, and which do you recommend?
- What types of side effects can I expect from treatment?
- Are there alternatives to the primary approach that you’re suggesting?
- I have other health conditions. How can I best manage them together?
- Do I need to restrict any activities?
- Is there a generic alternative to the medicine you’re prescribing?
- Are there brochures or other printed material I can take home with me? What websites do you recommend?
Don’t hesitate to ask other questions that occur to you.
What to expect from your doctor
Your doctor is likely to ask you a number of questions, such as:
- Do you have any underlying health conditions, such as diabetes or kidney disease?
- When did you begin experiencing symptoms?
- Have your symptoms been continuous or occasional?
- How severe are your symptoms?
- Does anything seem to improve your symptoms?
- What, if anything, appears to worsen your symptoms?
Periphreal Neuropathy Complications
Part 5 of the series on neuropathy from the Mayo Clinic website.
Complications
Complications
Complications of peripheral neuropathy may include:
- Reduced feeling. Because parts of your body may be numb, you may be less likely to feel temperature changes or pain. This can make you more susceptible to burns or skin trauma.
- Infection. Make sure to check your feet, as well as any other areas lacking usual sensation, regularly so that you can treat minor injuries before they become infected. This is especially important for people with diabetes, who tend to heal more slowly.
Periphreal Neuropathy Risk Factors
Part 4 of this series from the Mayo Clinic website.
Risk factors
Peripheral neuropathy risk factors include:
- Diabetes, especially if your sugar levels are poorly controlled
- Alcohol abuse
- Vitamin deficiencies, particularly B vitamins
- Infections, such as Lyme disease, shingles (varicella-zoster), Epstein-Barr, hepatitis C and HIV/AIDS
- Autoimmune diseases, such as rheumatoid arthritis and lupus, in which your immune system attacks your own tissues
- Kidney, liver or thyroid disorders
- Exposure to toxins
- Repetitive physical stress, possibly from occupational activities
Periphreal Neuropathy Causes
Part 3 of the series on this subject from the Mayo Clinic website.
Causes
Causes
It’s not always easy to pinpoint the cause of peripheral neuropathy, because a number of factors can cause neuropathies. These factors include:
- Alcoholism. Many alcoholics develop peripheral neuropathy because they make poor dietary choices, leading to vitamin deficiencies.
- Autoimmune diseases. These include lupus, rheumatoid arthritis and Guillain-Barre syndrome.
- Diabetes. When damage occurs to several nerves, the cause frequently is diabetes. At least half of all people with diabetes develop some type of neuropathy.
- Exposure to poisons. These may include some toxic substances, such as heavy metals, and certain medications — especially those used to treat cancer (chemotherapy).
- Infections. Certain viral or bacterial infections can cause peripheral neuropathy, including Lyme disease, shingles (varicella-zoster), Epstein-Barr, hepatitis C and HIV/AIDS.
- Inherited disorders. Examples include Charcot-Marie-Tooth disease and amyloid polyneuropathy.
- Trauma or pressure on the nerve. Traumas, such as motor vehicle accidents, falls or sports injuries, can sever or damage peripheral nerves. Nerve pressure can result from using a cast or crutches, spending a long time in an unnatural position or repeating a motion many times — such as typing.
- Tumors. Growths can form directly on the nerves themselves, or tumors can exert pressure on surrounding nerves. Both cancerous (malignant) and noncancerous (benign) tumors can contribute to peripheral neuropathy.
- Vitamin deficiencies. B vitamins — B-1, B-6 and B-12 — are particularly important to nerve health. Vitamin E and niacin also are crucial to nerve health.
- Other diseases. Kidney disease, liver disease and an underactive thyroid (hypothyroidism) also can cause peripheral neuropathy.
Periphreal Neuropathy Symptoms
Continuation of the series on periphreal neuropathy from the Mayo Clinic.
Symptoms
Symptoms
The nerves of your peripheral nervous system send information from your brain and spinal cord (central nervous system) to all other parts of your body and back again. Nerves that may be affected by peripheral neuropathy include:
- Sensory nerves that receive sensations such as heat, pain or touch
- Motor nerves that control how your muscles move
- Autonomic nerves that control functions such as blood pressure, heart rate, digestion and bladder function
Most commonly, peripheral neuropathy starts in the longest nerves — the ones that reach to your toes. Symptoms vary, depending on which types of nerves are affected. Signs and symptoms may include:
- Gradual onset of numbness and tingling in your feet or hands, which may spread upward into your legs and arms
- Burning pain
- Sharp, jabbing or electric-like pain
- Extreme sensitivity to touch, even light touch
- Lack of coordination
- Muscle weakness or paralysis if motor nerves are affected
- Bowel or bladder problems if autonomic nerves are affected
Peripheral neuropathy may affect one nerve (mononeuropathy), two or more nerves in different areas (multiple mononeuropathy) or many nerves (polyneuropathy).
When to see a doctor
Seek medical care right away if you notice any unusual tingling, weakness or pain in your hands or feet. Early diagnosis and treatment offers the best chance for controlling your symptoms and preventing further damage to your peripheral nerves. If your symptoms interfere with your sleep or you feel depressed, your doctor or pain specialist may be able to suggest treatments that can help.
Periphreal Neuropathy Definition
Well, in light of the progression of my neuropathy, I decided to check out more information. I went to the Mayo Clinic website and found this information. I have re-read the information in light of the new developments in my case. As with any portion of our lupus, or autoimmune journeys always talk to your doctor before starting any new treatments.
From Mayo Clinic website:
Periphreal Neuropathy
Definition
Peripheral neuropathy, a result of nerve damage, often causes numbness and pain in your hands and feet. People typically describe the pain of peripheral neuropathy as tingling or burning, while they may compare the loss of sensation to the feeling of wearing a thin stocking or glove.
Peripheral neuropathy can result from problems such as traumatic injuries, infections, metabolic problems and exposure to toxins. One of the most common causes is diabetes.
In many cases, peripheral neuropathy symptoms improve with time — especially if the condition is caused by an underlying condition that can be treated. A number of medications often are used to reduce the painful symptoms of peripheral neuropathy.
I’m Back!!!
Well hello one and all! I am back after that brief hiatus. I basically had to wait until I got my internet fixed. It is hard, although not impossible, to blog from my phone. I have done it, but I don’t have to like it…lol.
On to other topics now. First is my latest neurologist appointment. It was not good news. My lupus is attacking the neurons in my brain and causing me to have neuropathy that has spread quite a bit. So much so that I was advised to use a cane while walking now. I was also told to wear shoes at all times. The cane I do not mind so much because I have had to use it before. The shoes are an altogether different story.
You see, I am a barefoot loving country girl. In summer, spring and fall I hardly ever wear shoes at all! I wear footies around the house if I wear anyhting. Well, now that I think about it, the same goes for winter too. The only exception is when I have to go out in winter and for that, yes, I do wear shoes. (DUH!) You could say I am a natural footwear girl.
This having to wear shoes thing, although a necessity now, is also a fundamental slap to the way I live!! I hate shoes! They are torture devices for my feet. Now, as a result of this change in my body, I am forced to wear the things I detest. I know, I should just be grateful that I am alive but to me, this is not a good thing.
Also, we discussed the continued spread of the neuropathy and what would occur and the changes in my life that it would bring. Basically, my neuropathy cannot be contained like in diabetes, because the lupus is what is attacking my neurons in my brain so the disease is in the drivers seat on this one. That is bad news. I was also informed that if this continued its path, I would be in a wheelchair because the numbness will necessitate it due to balance and coordination issues. Let’s not even discuss the injury subject. Suffice to say that I want to keep all my parts and not need any removed.
I have waited a week to put this out here because I have had a lot of information to digest. I have had to mourn the loss pf sensation and its rapid spread. I have mourned the potential loss pf my mobility. I have had to realize that lupus is in control on this thing and I am a mere pawn in its path. Not pretty is it?
I am in process of finally getting unpacked in my new little home. I can see the end in sight. I can finally relax a little and actually enjoy the peace and quiet. No guilt trips, no manipulations, no temper tantrums, no ugliness (other than me that is). Ahhhhhh, home sweet home at last!
Oh, I forgot, I also am having an EEG of my face and an MRI of my neck to rule out any organic cause for my parasthesia in my face. What fun! I have more to report but will save it for another day. Hope you are all healthy and well. Keep your feet on the ground and your head in the clouds!
More Neurology Info
I got this information from the website http://members.shaw.ca/tiderington/cnslupus.html
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FYI *Re: Lupus Cerebritis and Cerebral Vasculitis* |
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SYMPTOMS or Manifestations of CNS-SLE In addition to headache, NP-lupus can cause other neurological disorders, such as mild cognitive dysfunction, organic brain syndrome, peripheral neuropathies, sensory neuropathy, psychological problems (including personality changes, paranoia, mania, and schizophrenia), seizures, transverse myelitis, and paralysis and stroke. The diagnosis is not always straightforward. Although there are no “definitive” tests for CNS-lupus, there is a type of brain scan called a “SPECT brain scan” that may be positive even when an MRI brain scan is normal. NP-SLE is extremely variable. Further confounding the ability to diagnose NP-SLE is the fact that a patient may develop a psychiatric illness as a consequence of having lupus without having NP-SLE. Also, certain therapies may produce psychiatric disturbances. As the therapy used to treat patients with SLE can cause psychiatric problems, it makes it very difficult for the rheumatologist to decide if the patient is suffering from primarily NP-SLE, reactive depression or the side effects of steroid therapy. It is usually necessary to rule out other conditions that may mimic central nervous system manifestations of systemic lupus erythematosus, including infection and toxic metabolic states. CNS-SLE DIAGNOSIS The rheumatologist has a battery of diagnostic tests and procedures which can aid him in making the diagnosis of NP-SLE. To put this in the proper perspective, a patient who has multi-organ involvement and signs of severe NP-SLE, such as seizures, strokes, etc., can easily be given the diagnosis of NP-SLE. For such a patient, the rheumatologist is confronted with the difficult decision of determining if the headaches or anxiety are truly caused by NP-SLE. TREATMENT of CNS-SLE Since the indications of NP-SLE can vary from very severe to mild symptoms, should all patients with NP-SLE be treated with steroids, irrespective of the intensity of the disease activity? Patients with central nervous system manifestations of lupus erythematosus who present with organic brain syndrome or coma can be treated with intravenous methylprednisolone pulse therapy. Conclusively, individuals with major manifestations of NP-SLE require aggressive therapy with high dose steroids and perhaps immunosuppressive drugs, plus other appropriate treatment such as anti-seizure medication. But what should be done for patients with minor manifestations of neurologic and psychiatric NP-SLE? CONCLUSIONS The study of NP-SLE is still in its infancy, but certain strides are being made. |
More Neurological Information
This information is from the NINDS website.
NINDS Neurological Sequelae Of Lupus Information Page
Synonym(s): Lupus – Neurological Sequelae, Systemic Lupus Erythematosus
Table of Contents (click to jump to sections)
Is there any treatment?
What is the prognosis?
What research is being done?
Clinical Trials
Organizations
Additional resources from MedlinePlus
What are Neurological Sequelae Of Lupus?
Lupus (also called systemic lupus erythematosus) is a disorder of the immune system. Normally, the immune system protects the body against invading infections and cancers. In lupus, the immune system is over-active and produces increased amounts of abnormal antibodies that attack the body’s tissues and organs. Lupus can affect many parts of the body, including the joints, skin, kidneys, lungs, heart, nervous system, and blood vessels. The signs and symptoms of lupus differ from person to person; the disease can range from mild to life threatening.
Initial symptoms of lupus may begin with a fever, vascular headaches, epilepsy, or psychoses. A striking feature of lupus is a butterfly shaped rash over the cheeks. In addition to headache, lupus can cause other neurological disorders, such as mild cognitive dysfunction, organic brain syndrome, peripheral neuropathies, sensory neuropathy, psychological problems (including personality changes, paranoia, mania, and schizophrenia), seizures, transverse myelitis, and paralysis and stroke.
Is there any treatment?
What is the prognosis?
What research is being done?
ER Visit
Well, the neuropathy pain has been getting worse each day. I see the neurologist on the 24th. In the meantime, a friend of mine took me to the ER because I cannot sleep from the pain. It is not only both feet now, it has also moved into my legs!
For the past several days I have gone to bed and the pain wakes me back up. It is a vicious cycle of pain and no sleep. Frustrating.
So, I headed to my ER. They actually got me right in and checked me out. Decided no blood clots were present. It is just the pain of the neuropathy.
Neuropathy is usually associated with those who have diabetes. A little known fact is that when lupus starts affecting your brain, it can cause your nerves to go haywire, just like in diabetes patients. It causes a pins and needles type of pain. It causes acute pain and can be really horrible. I have posted previously on this subject of the connection from lupus.
Sorry if this post is a little disjointed. The ER doctor gave me a healthy dose of morphine along with a triple dose of neurontin. The pain is still there, just not as bad. I have some relief finally. Now, on the 24th me and my neurologist are going to have a major pow wow and get this pain under control. I cannot live like this, in constant pain. I totally understand why some of our fellow lupus warriors have committed suicide. When you have this pain all the time, you get to wondering why should you keep trying. Been there. Now, if this will give me a little break from the pain, maybe I can get back on track and feeling better. Ok, a girl can dream at least.
Related articles
- Neuropathy Pain Relief (answers.com)
- Medicines For Relieving The Ache Of Peripheral Neuropathy (oleole.com)
Seriously?
I would like to say up front that I think my team of doctors is a pretty good team overall. They take good care of me each, in their own way or specialty. I am thankful to have them. However, I do believe that there are times I would like to fire the lot of them and start all over again. Why you ask? Let me explain…
I have been experiencing some of the most horrible pain of neuropathy I have ever had lately. Crying, throbbing, nasty mean pain. Ok, so I decided to do what I am supposed to do, I called my neurologist. I called his office where, I find, the earliest they can get me in is July 24th. Seriously! Despite me telling them the pain I am in and all. So, I take it. I asked them if they could give me something for the pain until the appointment. They suggested I call my family doc and see them to get something in the interim.
So, I call my family doctor. I ask to have an appointment and explain why I need to see her. They tell me they will call me back after talking to the doctor. I get a phone call back a while later and I am told that since I have a neurologist who treats my neuropathy, I should see him for the pain. Seriously? I just explained that he could not see me for almost a month!
I did ask at both practices what I should do about the pain. Both suggested I go to the ER and I could get some temporary relief there. Boggles my mind!
I am trying to go about this the right way and I basically got the run around. In the meantime, the pain is still there, making me hurt more each day. Let me tell you why I do not go to the ER though. You see, if I go, it always goes like this… I am seen, given a shot or something then sent home. I am treated like a whiner, a silly woman who is drug seeking for pain killers. I just wish once, these same people had drop of the pain I live in daily and could see just how painful it is. A little empathy would go a long way.
I guess what makes me really boiling mad is that when someone in TRUE pain presents to the medical establishment, they get no relief for fear of being accused of supplying medications to drug addicts. However, the true drug addicts can get whatever their heart desires at any time, legally or not legally. It is the honest folks who are paying the price.
Makes me think that I should find my neighborhood drug dealer for relief. Oh wait! If I do that, then I am a criminal and can go to jail. On the other hand, in jail I get free medical care and drugs. Wow! I understand why people with chronic and incurable pain get so angry! Is this wrong? Yes, because the really sick people are the ones who suffer because of the drug seekers who abuse the medications that we, the truly ill need.
Ok, getting off my soapbox now. Just had to vent. Thanks for bearing with me!
10.01.2010 neuro visit
Today I went to see my neurologist for a re check and other issues. He is a relatively new doctor on my list, so I am still seeing how he reacts to me. I have been pleasantly surprised so far that he is not only very personable but knows his stuff too. He also has passed my test for researching my issues and passed with flying colors.
On to the visit. We discussed the periphreal neuropathy in my feet and hands and it was decided that I should start upping my dosage of neurontin as slowly as I feel comfortable doing it. My feet are also turning purple (as I have discussed before on here) and so he checked them and said I have slow capillary refill so he is ordering a vascular study of my legs and feet. I also need to have new bloodwork (oh yippee).
Now onto the migraine situation. I am on midrin, an older migraine medication that treats the headache when it occurs. I have taken it for years now to help with these awful migraines. It has done the job pretty well, although I have breakthrough pain at times. After discussing this, my neurologist suggested we try topomax instead. He said that it helps to prevent them from starting and that we should see how it works. It also has a quality similar to neurontin but in smaller quantity for the neuropathy as well so it would help a little in thaat department as well. I do have to watch for kidney stones, since I am prone to them and this medication can cause them. I know how they feel so I hope to keep the stones at bay.
If anyone out there has used topomax, please let me know how it works for you. I am always curious to find out from others how a medication helps them. Since this is a new one for me, I will be interested in hearing from anyone on it.
Now, I am off to the campground for a night or two to digest this latest development in my care and research it as well. I am sure I will be posting the results here. In the meantime, thanks for all the support I get from you all. It really does help me to cope with all the manifestations of the wolf.
