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mrstjscott
05-29-2011, 01:55 AM
Hello everyone. No matter what shoes or sneakers I wear, my feet burn and tingle a lot. I don't know why it is getting worse. I have been diagnosed with fibromyalgia. My pcp's office called Saturday and said I need to come in to discuss "inflammation". Didn't say where the inflammation is but I wonder if that's part of the reason why my feet are tingling and burning.

Gizmo
05-29-2011, 02:10 AM
Hello fellow insomniac! Has your doctor looked into peripheral neuropathy as a cause? The following info is from the Mayo Clinic site:

Peripheral neuropathy 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 is caused by nerve damage. It can result from such problems 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 it's caused by an underlying condition that can be treated. A number of medications are often used to reduce the painful symptoms of peripheral neuropathy.

Causes

It's not always easy to pinpoint the cause of peripheral neuropathy, because a number of factors can cause neuropathies. These factors include:

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.
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.
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.
Alcoholism. Many alcoholics develop peripheral neuropathy because they have poor dietary habits, leading to vitamin deficiencies.
Infections. Certain viral or bacterial infections can cause peripheral neuropathy, including Lyme disease, shingles (varicella-zoster), Epstein-Barr, hepatitis C and HIV/AIDS.
Autoimmune diseases. These include lupus, rheumatoid arthritis and Guillain-Barre syndrome.
Other diseases. Kidney disease, liver disease and an underactive thyroid (hypothyroidism) also can cause peripheral neuropathy.
Inherited disorders. Examples include Charcot-Marie-Tooth disease and amyloid polyneuropathy.
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.
Exposure to poisons. These may include some toxic substances, such as heavy metals, and certain medications — especially those used to treat cancer (chemotherapy).

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 the immune system attacks your own tissues
Kidney, liver or thyroid disorders
Exposure to toxins
Repetitive physical stress, possibly from occupational activities

mrstjscott
05-29-2011, 02:30 AM
Wow. Yes, I am recently new to the insomniac group (lol). Thank you for the information. I will ask my doctor to check for that. GOD knows I don't look forward to any more diagnosis'.
Have a great day. I hope you can get some sleep. I going to go and try. I think I feel it coming on. LOL and thanks a lot.

Peridot20_Gem
05-29-2011, 03:09 AM
Hi mrstjscott,

I'm adding some info regarding the burning and tingling in your feet and fibromyalgia which you was diagnosed can also cause this, besides Raynauds which i also have bad, it's such a terrible feeling so i know what your going through. xxx


Symptoms of burning and tingling in the feet

Many conditions can affect the nerves of the foot and cause numbness, tingling and burning. Numbness and tingling usually represent either a neurological or vascular problem, but the list of specific causes is extensive. To diagnose what is causing the symptoms, a doctor will need to know where the numbness is located, when it started, the speed of onset and if the patient is experiencing any other relevant symptoms.

Diabetes
Diabetic neuropathies are nerve disorders caused by diabetes. Some people with nerve damage have no symptoms and others experience pain, tingling or numbness in their hands, arms, feet and legs. The risk for neuropathy increases with age and may depend on the length of time someone has had diabetes. Neuropathy is more common in patients who have problems controlling their blood sugar, have high blood pressure or high blood fat levels, or who are overweight.

Peripheral Neuropathy
The Juvenile Diabetes Research Foundation International explains that there are different types of neuropathy and that peripheral neuropathy causes pain, burning, tingling or loss of feeling in the toes, feet, legs, hands and arms. It is also known as sensorimotor neuropathy and is the result of nerve damage in the arms or legs. Symptoms include tingling or burning sensations, along with numbness or insensitivity to temperature or pain, and a patient's feet and legs are usually affected before his hands and arms.

Pressure on Nerves
Numbness and tingling in the feet can occur when someone remains in the same position---either sitting or standing---for a long time because this creates pressure on the nerves. Compression of spinal nerves from a herniated disk or on peripheral nerves from enlarged blood vessels, infection, tumors or scar tissue can lead to tingling or numbness in the feet. Obesity and fluid retention cause pressure on the ankles or compression of the nerves in the lower back and make a person's feet tingle or become numb.

Atherosclerosis
Atherosclerosis is a condition in which fatty material forms on the arteries' walls and then thickens, hardens, forms calcium deposits and eventually blocks the arteries. Cholesterol or plaque buildup in the legs can cause pain, numbness and tingling in the feet, especially while walking.

Raynaud's Disease and Fibromyalgia
Tingling and numbness in the toes and feet could be caused by Raynaud's disease, a condition that impairs circulation in the extremities. Raynaud's phenomenon is often brought on by exposure to cold weather or intense emotional stress, and people who have it may also experience discoloration of the toes. Raynaud's attacks occur when the body senses it is cold and tries to preserve heat by constricting the surface blood vessels in the hands and feet, explains Fibromyalgia-Symptoms.org.



Fibromyalgia can also cause numbness and tingling, but the reason for this is unknown. If numbness and tingling are chronic and experienced in the feet only, conditions other than fibromyalgia might be the cause of the symptoms.

Tarsal Tunnel Syndrome
The pinching of the tibial nerve, which stretches down the back of the leg to the inner ankle, can cause tarsal tunnel syndrome. Because the tibial area of the ankle is where nerves, muscles and ligaments meet, the tibial nerve is prone to being constricted or pinched. Tarsal tunnel syndrome symptoms include foot pain or weakness, tingling or numbness on the arches or soles of the feet.

mrstjscott
05-29-2011, 08:54 AM
Thank you. This is more great information. Having more symptoms with breathing and chest pains. Have had numerous stress tests and echocardiograms done with them all coming back normal. The pains in my chest occur when I walk more than a few minutes and if I walk up steps. Actually, the least bit of activity causes chest pains. Sometimes the pains radiate from my left jaw down to my left leg. I get left arm pain and sometimes am clammy, cold and/or sweaty. I currently take Metoprolol for my blood pressure. When I take two pills at a time, the symptoms subside, somewhat, but then after a few hours, the symptoms return. I am now experiencing trouble sleeping. I can only sleep now with the help of a prescription sleep aid. I am weary and a little concerned that I won't be able to be "normal". I just turned 47 on May 6th and I feel like I'm waaaaayyyyyy older than that.

Peridot20_Gem
05-29-2011, 09:54 AM
Your welcome to the info off me and Gizmo, that's what we're here for to help one another.

I have lung pain but it's through me having bronicle bronchitis and also the Lupus making the muscle's around my lungs swell and my breathing is terrible i'm 42 and feel 90, symptoms started with me at 14 and it was only 3yrs ago i was diagnosed with Lupus etc but was also told i was born with it, so i've had a rough ride half my life.
Refering your sleeping Lupus can cause insomnia in some cases, i'm just grateful it's not hit me in that direction yet but i do take enough meds to knock me out for good.
I've been checking your symptoms and also the pain your in, it sounds like Fibromyalgia may be causing it and i thing your poblems may be coming from that, so i'll had more info for you to check against, incase it helps you.

Terri xxx

Peridot20_Gem
05-29-2011, 09:59 AM
COSTOCHONDRITIS -(Fibromyalgia)

Costochondritis: A Painful Problem
The chest pain associated with fibromyalgia is referred to as costochondritis. It is an inflammation of the cartilage that joins the ribs to the chest bone. It is this inflammation that causes the sharp chest pains inside the chest wall. The pain of costochondritis often mimics the pain of cardiac problems, including heart attacks and stroke. This can be quite scary for some sufferers; however, costochondiritis rarely causes any physical complications.

Costochondritis affects about 60% to 70% of fibromyalgia sufferers. Costochondritis in women is particularly common, especially in women between the ages of 20 and 40. Costochondritis rib pain can last for weeks and even months, and can reappear at different intervals throughout your illness. Costochondritis can also affect those who don’t have fibromyalgia and is often a result of chest trauma or exercise-related injury. In fact, it is thought that about 10% of the general population has costochondiritis.

Where does Costochondritis Hit?
Costochondritis affects the junction between the ribs and the chest bone, also called the sternum. 7 bits of cartilage attach your ribs to your sternum, and costochondiritis causes this cartilage to become inflamed and sore. If you have costochondiritis, you will be able to feel pain upon movement of your upper torso or when you touch your ribs. Most commonly, pain is felt on the left side of your chest, though chest pains on the right side, or even on both sides, can occur.

Any one of the 7 cartilage junction points can be affected by costochondiritis. 90% of people with costochondritis suffer from more than just 1 inflamed cartilage junction point. In severe costochondritis, all 7 cartilage junction points can be inflamed. This inflammation causes pain on the anterior (front) chest wall, which can be felt when you move and when you palpate your ribs. Typically, the second to fifth ribs are affected, though it is also common for the sixth rib to be affected.

What Does Costochondritis Pain Feel Like?
Costochondritis pain is often described as a stabbing or aching pain in the ribs. This pain can wax and wane: some days it will be worse, while other days it will be much better. The sharp pain caused by costochondritis generally begins in the chest. This pain can then radiate outwards, attacking the shoulders, neck, and upper abdomen. Costochondritis pain can last for long periods of time and chronic costochondritis is not uncommon. However, most pain should be gone within 6 months to a year from the onset of symptoms.

Symptoms of Costochondritis
If you have fibromyalgia, be on the lookout for these costochondritis symptoms:


•sharp, stabbing pain in the front of the chest
•ribs that are sore to the touch
•pain on the left or right side of the chest
•upper chest pains
•burning pain in the ribs
•pain that radiates up the back of the neck and shoulders
•pain in your chest when you sneeze or cough
•pain that increases with activity, exertion, or deep breathing
•pain that decreases with rest, movement, or slow breathing

Costochondritis is also associated with other, secondary symptoms. These include:


•rapid heart rate
•irregular heart rate
•shortness of breath or difficulty breathing

If you are experiencing any of these symptoms it is important to visit with your health care provider in order to rule out any other complications.

Causes of Costochondritis in Fibromyalgia
To date, the specific causes of costochondritis are unknown, though researchers do believe that a variety of factors could play a role in the development of the illness.

Repetitive Activity: Repetitive activity may be responsible for the chest pain suffered by people with fibromyalgia. Sitting at a desk or leaning forward over a computer for long periods of time often puts stress on the muscles in the chest. People with fibromyalgia already have hypersensitive muscles, and this repetitive activity may exacerbate pain in the chest area, causing costochondritis.

Fibromyalgia Tender Points: The tender points present in fibromyalgia may be responsible for causing costochondritis in fibromyalgia sufferers. Tender points are located just to the left of the chest, underneath the collarbone. These tender points may be causing intense pain in the chest region.

Myofascial Pain: Many fibromyalgia sufferers also have myofascial pain syndrome, an illness that causes the appearance of painful trigger points throughout the body. Costochondritis may be the result of trigger points that have developed in the rib area.

Infection: Rarely, costochondritis can be caused by upper respiratory tract infections or non-allergic rhinitis. These conditions can cause long periods of repetitive coughing. This coughing can stress and strain the cartilage that connects the ribs with the sternum, causing constant chest pains.

Effects of Costochondiritis on Fibromyalgia
Costochondritis can exacerbate the symptoms of fibromyalgia. In particular, fibromyalgia often inhibits your ability to participate in certain activities or sit in certain positions for long periods. Because costochondritis causes such intense chest pain, it often makes sleeping difficult or impossible, causing disordered sleeping and insomnia. Costochondritis disability is not uncommon, especially in fibromyalgia.

It is important that if you are experiencing any type of chest pain that you immediately consult a physician in order to correctly diagnose the nature of the pain.

mrstjscott
05-29-2011, 10:11 AM
Wow. This is so awesome. Thank you so, so much for this post. I have atrialfibrilation (a-fib) so I do experience rapid heart rate
as well as irregular heart rate. The rapid and irregular heart beat come from out of nowhere. I can be sitting down doing nothing and the a-fib will attack. My heart rate has gotten as high as 200 beats per minute and I had to get i.v. shocked back into rhythm. I currently take metoprolol for hypertension because my blood pressure unexplainably shoots up. I can't do housework without being short of breath and sweating. Sometimes it feels like my heart is just gonna stop. I actually have to grasp for breath sometimes. I have a cardiac appointment on June 16th. I really am weary of the cardiologists because for as many stress tests (medically induced and on the treadmill), they all come back normal. When Ii went to my pcp last week, the nurse wanted to take my "resting" blood pressure but I insisted she take it right then because I wanted the doctor to see how my heart acts just from walking a few steps. So now, I don't travel alone because I am afraid that something will happen to me. At least when I'm with someone, they can call 911.
Thank you again Peridot20_Gem for the information.

Gizmo
05-29-2011, 10:18 AM
Having more symptoms with breathing and chest pains. Have had numerous stress tests and echocardiograms done with them all coming back normal. The pains in my chest occur when I walk more than a few minutes and if I walk up steps. Actually, the least bit of activity causes chest pains. Sometimes the pains radiate from my left jaw down to my left leg. I get left arm pain and sometimes am clammy, cold and/or sweaty. I currently take Metoprolol for my blood pressure. When I take two pills at a time, the symptoms subside, somewhat, but then after a few hours, the symptoms return. I just turned 47 on May 6th and I feel like I'm waaaaayyyyyy older than that.

I can totally relate to this. I am 47 and feel ancient. I am going in for a cardiac cath on Wednesday because of chest pain that goes down both arms when I walk, that goes away when I stop. It got bad for a few weeks, so a screwed up the courage to see the cardiologist. Now that I have the test scheduled, of course it is better. He told me that stress tests and echos are good, but not definitive. He said if the heart cath is negative, then we know for certain that there isn't a problem. He ordered it because he also heard something in my heart that made him concerned about pulmonary hypertension, and I have a partial heart block has progressed since 4 years ago. The cardiologist is the first doctor to really take my chest pain seriously. I have been complaining about it for years to my rheumy and PCP.

The cardio said they are finding that lupus can affect the micro vessels around the heart and cause the kind of pain I am having, and that it isn't lifethreatening, but does respond to nitro. He said he was sure that the pain was a result of SLE, whether it's due to athrosclerosis, pulmonary hypertension or micro vessel damage. So all of a sudden, my rheumy is worried, too. LOL

Have you seen a cardiologist? The one I saw gave me nitroglycerine to try - said it would be diagnostic if it helped. Might be worth a try for you, too. I haven't taken any because things are better and my BP and heart rate are quite low to start with.

Peridot20_Gem
05-29-2011, 10:25 AM
Your welcome to the info and when i'm looking at info about my own condition's don't worry it's soon printed off to show the specialist.

200 beats per minute that's a hell of alot and suffering with high blood pressure and bending won't help one bit, now i suffer with low blood pressure and i go giddy bending but that can't be treated like high, so they just keep an eye on it.
Over 2wks ago i went to the doctor's because i was taking 3 inhalers aday and they was testing me for 2 lung diseases i only got half way through my lung capacity could'nt cope, it sent me dehydrated to glasses of water went back straight away and i can't stand the stuff and it did make me go light headed, they want to test furthur along the line but have took me off the 3 inhalers onto just one strong one with a steriod base in it.

Well how you travel alone, it's taxi's everywhere for me and when my hubby can't come it's phoning one another to make sure i'm ok, it's a right life to lead but i do hope your cardiac appointment goes well and keep we updated please.

((Hugs Terri)) xxx

Peridot20_Gem
05-29-2011, 10:32 AM
Gizmo,

I wish you the best of luck mate with your tests and if you do have pulmonary hypertension then that does come from SLE.

Peridot20_Gem
05-29-2011, 10:38 AM
Gizmo read this on Pulmonary Hypertension

Pulmonary hypertension is a rare lung disorder in which the arteries that carry blood from the heart to the lungs become narrowed, making it difficult for blood to flow through the vessels. As a result, the blood pressure in these arteries -- called pulmonary arteries -- rises far above normal levels. This abnormally high pressure strains the right ventricle of the heart, causing it to expand in size. Overworked and enlarged, the right ventricle gradually becomes weaker and loses its ability to pump enough blood to the lungs. This could lead to the development of right heart failure.

Pulmonary hypertension occurs in individuals of all ages, races, and ethnic backgrounds although it is much more common in young adults and is approximately twice as common in women as in men.

Why do the pulmonary arteries narrow?
Scientists believe that the process starts with injury to the layer of cells that line the small blood vessels of the lungs. This injury, which occurs for unknown reasons, may cause changes in the way these cells interact with the smooth muscle cells in the vessel wall. As a result, the smooth muscle contracts more than normal and narrows the vessel.

What are the symptoms of pulmonary hypertension?
Symptoms of pulmonary hypertension do not usually occur until the condition has progressed. The first symptom of pulmonary hypertension is usually shortness of breath with everyday activities, such as climbing stairs. Fatigue, dizziness, and fainting spells also can be symptoms. Swelling in the ankles, abdomen or legs; bluish lips and skin, and chest pain may occur as strain on the heart increases. Symptoms range in severity and a given patient may not have all of the symptoms.

In more advanced stages of the disease, even minimal activity will produce some of the symptoms. Additional symptoms include irregular heart beat (palpitations or strong, throbbing sensation), racing pulse, passing out or dizziness, progressive shortness of breath during exercise or activity, and difficulty breathing at rest. Eventually, it may become difficult to carry out any activities as the disease worsens.

What causes pulmonary hypertension?
The following are some known causes of pulmonary hypertension:

The diet drug "fen-phen." Although the appetite suppressant "fen-phen" (dexfenfluramine and phentermine) has been taken off the market, former fen-phen users have a 23-fold increase risk of developing pulmonary hypertension, possibly years later.
Liver diseases, rheumatic disorders, lung conditions. Pulmonary hypertension also can occur as a result of other medical conditions, such as chronic liver disease and liver cirrhosis; rheumatic disorders such as scleroderma or systemic lupus erythematosus (lupus); and lung conditions including tumors, emphysema, chronic obstructive pulmonary disease (COPD), and pulmonary fibrosis.
Certain heart diseases. Heart diseases including aortic valve disease, left heart failure, mitral valve disease, and congenital heart disease can also cause pulmonary hypertension.
Thromboembolic disease. A blood clot in a large pulmonary artery can result in the development of pulmonary hypertension.
Low-oxygen conditions. High altitude living, obesity, and sleep apnea can also lead to the development of pulmonary hypertension.
Genetic predisposition. Pulmonary hypertension is inherited in a small number of cases. Knowing that someone in the family had or has pulmonary hypertension should prompt you to seek early evaluation should symptoms occur.
Pulmonary hypertension may also be caused by other conditions, and in some cases, the cause is unknown.

How is pulmonary hypertension diagnosed?
Because pulmonary hypertension may be caused by many medical conditions, a complete medical history, physical exam, and description of your symptoms are necessary to rule out other diseases and make the correct diagnosis. During the physical exam, your health care provider will:

listen for abnormal heart sounds such as a loud pulmonic valve sound, a systolic murmur of tricuspid regurgitation, or a gallop due to ventricular failure.
examine the jugular vein in the neck for engorgement.
examine the abdomen, legs, and ankles for fluid retention.
examine nail beds for bluish tint.
look for signs of other underlying diseases that might be causing pulmonary hypertension.
Other tests that might be ordered include:

Blood tests:
◦Complete metabolic panel (CMP): Examines liver and kidney function
◦Autoantibody blood tests, such as ANA, ESR, and others: Screens for collagen vascular diseases
◦Thyroid stimulating hormone (TSH): A screen for thyroid problems
◦HIV: A screen for human immunodeficiency virus
◦Arterial blood gases (ABG): Determines the level of oxygen in arterial blood.
◦Complete blood count (CBC): Tests for infection, elevated hemoglobin, and anemia
◦B-type natriuretic peptide (BNP): A marker for heart failure
Doppler echocardiogram: Uses sound waves to show the function of the right ventricle, to measure blood flow through the heart valves, and then calculate the systolic pulmonary artery pressure.
Chest X-ray: Shows an enlarged right ventricle and enlarged pulmonary arteries.
6 minute walk test: Determines exercise tolerance level and blood oxygen saturation level during exercise.
Pulmonary function tests: Evaluates for other lung conditions such as chronic obstructive pulmonary disease and idiopathic pulmonary fibrosis among others.
Polysomnogram or overnight oximetry: Screens for sleep apnea (results in low oxygen levels at night).
Right heart catheterization: Measures various heart pressures (ie, inside the pulmonary arteries, coming from the left side of the heart), the rate at which the heart is able to pump blood, and finds any leaks between the right and left sides of the heart.
Ventilation perfusion scan (V/Q scan): Looks for evidence of blood clots along the pathway to the lungs.
Pulmonary angiogram: Looks for blood clot blockages in the pulmonary arteries.
Chest CT scan: Looks for blood clots and other lung conditions that may be contributing to or worsening pulmonary hypertension.
How is pulmonary hypertension treated?
Appropriate diagnosis and analysis of the problem is necessary before starting any treatment. Treatment varies per individual based on the different underlying causes but generally includes taking medications; making lifestyle and dietary changes; having surgery, if necessary; and seeing your doctor regularly. Listed below are medication and surgical treatment approaches.

Medications
Many different types of medications are available to treat pulmonary hypertension. Treatment choices, such as those listed below, depend on the severity of pulmonary hypertension, the likelihood of progression, and individual drug tolerance.

Oxygen — replaces the low oxygen in your blood.
Anticoagulants or "blood thinners" such as warfarin sodium (Coumadin) — decreases blood clot formation so blood flows more freely through blood vessels. Note: when taking anticoagulant medications, it is important for you to monitor bleeding complications and have regular lab work to monitor the level of medication in your bloodstream.
Diuretics or "water pills" [such as furosemide (Lasix®), spironalactone (Aldactone®)] — removes extra fluid from the tissues and bloodstream, which reduces swelling and makes breathing easier.
Potassium (such as K-dur®) — replaces potassium (an essential nutrient) that may be lost with increased urination when taking diuretics.
Inotropic agents (such as digoxin) — improves the heart’s pumping ability.
Vasodilators [such as nifedipine (Procardia®) or diltiazem (Cardizem®)] — lowers pulmonary blood pressure and may improve the pumping ability of the right side of the heart.
Bosentan (Tracleer®), ambrisentan (Letairis®) — helps block the action of endothelin, a substance that causes narrowing of lung blood vessels. These medications require monthly labwork to monitor liver function.
Epoprostenol (Flolan®), treprostinil sodium (Remodulin®, Tyvaso®), iloprost (Ventavis®) — dilates pulmonary arteries and helps prevent blood clots from forming.
Sildenafil (Revatio®), tadalafil (Adcirca®) — relaxes pulmonary smooth muscle cells, which leads to dilation of the pulmonary arteries.

mrstjscott
05-29-2011, 11:03 AM
Wow. My head is spinning. These symptoms sound EXACTLY like what I am experiencing. I will have to show this to my cardiologist. Thank you Peridot and GIZMO for this great information. You guys ROCK!!!

Peridot20_Gem
05-29-2011, 11:13 AM
If you feel like any of these symptoms are simular to what your suffering, either take note of them or print them because for a start off he'll know you chatting to people who know what your going through, suffering simular aspects and besides that mine shows in my signature, overlapping A1 Diseases with Autoimmune diseases. plus we showing info about problems which will most likely shock him/her anyway.

Doctor's today think we're thick but if we did'nt study the Disease no one would know nothing.

Terri xxx

mrstjscott
05-29-2011, 11:41 AM
Thank you Terri. I will try to print it out and show it to my doctor. Otherwise, I will take my laptop and show the doctor.

Peridot20_Gem
05-29-2011, 01:26 PM
Theresa,

If you can't print it out and could take your laptop don't foget you need a dongle for it to work, you could either go to the site direct and let the specialist see it or even better copy and paste it to your notepad in your laptop and file it, then when your there just open it up for the specialist to read, either way your showing the specialist symptoms to what your getting.

magistramarla
05-29-2011, 09:51 PM
I have tingling and burning in my toes and feet, too. The rheumy didn't seem very concerned and said "probably Raynaud's".
When I asked the neuro about it and pointed out that I really worry when I'm driving and can barely feel how hard I'm pressing on the brake, his reply was: "There is nothing wrong with your muscles. Just pay more attention to your speedometer".
I have worthless docs. I hope that you have better luck with yours.
Hugs,
Marla

Gizmo
05-29-2011, 10:18 PM
When I asked the neuro about it and pointed out that I really worry when I'm driving and can barely feel how hard I'm pressing on the brake, his reply was: "There is nothing wrong with your muscles. Just pay more attention to your speedometer".
I have worthless docs. I hope that you have better luck with yours.

Don't you just want to ask for your copay back when doctors act like that!? My daughter isn't driving yet because she can't feel her feet and her hands go numb when her elbows are bent. It infuriates me that doctors care so little about the daily battles in our lives, they want to see something and fix it. If they can't do that, they're done. My Mom has had some success with accupunture with her neuropathy, and there are some meds that work, too, but my brain is too tired to pull the names up.

Peridot20_Gem
05-30-2011, 07:22 AM
Gizmo,

Your correct on what your saying, the trouble with specialist they've only trained in the field, in other words done the paperwork and saw a few bodies which have most likely passed away with Sle or Lupus and saw what it's done, so when they pass their qualification's they think they can play god with people's lifes and when it gets to much where things are'nt helping people, your more or less kicked aside.

Well they may have seen things while training but they definitely don't live with the PAIN.

mrstjscott
05-30-2011, 07:12 PM
Gizmo, I thank you for posting this about your daughter because it made me remember that my arms go numb too, when they are bent. One doctor said I have "tennis elbow" or "golfers elbow". He gave the medical term, but I don't remember it. Question: What are the symptoms of MS?

Glibby
05-30-2011, 07:25 PM
Hello everyone. No matter what shoes or sneakers I wear, my feet burn and tingle a lot. I don't know why it is getting worse. I have been diagnosed with fibromyalgia. My pcp's office called Saturday and said I need to come in to discuss "inflammation". Didn't say where the inflammation is but I wonder if that's part of the reason why my feet are tingling and burning.

Hi Mrstjscott....I haven't read through any of your posts.....but what meds are you currently taking?

magistramarla
05-30-2011, 09:30 PM
Gizmo, I thank you for posting this about your daughter because it made me remember that my arms go numb too, when they are bent. One doctor said I have "tennis elbow" or "golfers elbow". He gave the medical term, but I don't remember it. Question: What are the symptoms of MS?

I'm not an expert on MS - Rob is - but my neuro was convinced that I had it when I went in with the mumb, tingling feet and leg muscles that are constantly tight (spastic) and often spasm so hard that it pulls me to the floor or wakes me in the night. MS affects the mylenin sheaths in the muscles and it will show up as white lesions in the brain stem on a MRI or the doc can do a lumbar punch to check for antibodies running around in the spinal fluid. Both of those were negative for me, so the neuro suddenly lost interest.

Here's the interesting thing. Go check this site: http://www.sjogrensworld.org/forums/ and look for a thread that compares Sjogren's and MS. I have a positive Dx fo Sjogren's. It seems that many of us that have it have many of the symptoms of MS, but the mylenin sheath is not damaged. SJS can mimic MS.
I can't convince my rheumy or the neuro (whom I refuse to see again) of this. They both claim that SJS is "only" dry eyes and dry mouth. All one has to do is read through the Sjogren's site to know this this is NOT true.
Check out the site, and see if that helps to explain things to you. I'm sure that Rob will be along to better explain MS and correct my mistakes.
Hugs,
Marla

Peridot20_Gem
05-31-2011, 03:22 AM
Marla,

Is correct in what she says there's alot more to sjogren's diseases than what they state, the symptoms could either be this or i think Raynauds because that as alot to answer for besides.

Twinmama
06-01-2011, 08:01 PM
Thanks, for all the information. This is very helpfull. I was just about to post a thread about tingling and burning in legs and feet myself.
thanks everyone :)

tgal
06-01-2011, 08:46 PM
Like Marla I was sent to an MS specialist because of the numbing and tingling (ok and the falling and dragging of my foot). They said no MS and so many of the people here talk about the foot/leg and hand/arm issues I think it has to be Autoimmune in some way

Gizmo
06-02-2011, 02:40 AM
Like Marla I was sent to an MS specialist because of the numbing and tingling (ok and the falling and dragging of my foot). They said no MS and so many of the people here talk about the foot/leg and hand/arm issues I think it has to be Autoimmune in some way

About 5 years ago my daughter started getting "complex migraines" that looked just like strokes. She would lose her vision, her speech would get slurred, half her face drooped and she'd totally lose use of her right arm and drag her right leg, and her arm was so numb she was injuring herself without knowing it. High doses of prednisone would help, but the neurologist said it was "a placebo effect" and that she only got better because she thought she should get better. As background, we had suspected AI disease and had been to the rheumy several times already. Anywhooo, after all the scans came back negative for MS and stroke, the neurologist took away the prednisone. Her next "migraine" lasted 2 weeks and when she finally quit talking like she was drunk, she had totally lost use of her right arm and drug her right leg. Some days she couldn't walk at all. This lasted for 18 MONTHS. The tide turned when she got a large, painful rash on her back and her PCP gave her a burst of steroids. After a couple days she got a tiny bit of movement back in her pinky finger. We convinced the PCP and rheumy to let her stay on a low dose, and to add Plaquinil. Four months and lots of OT later, she had complete use of her arm (and leg) again. The migraines stopped and she hasn't had an episode since. The docs all said it didn't make any sense because her reflexes and (most) of her labs were normal, but they humored us with the meds. The neuro kept saying it was a psychological problem, but we found out last year that she never charted that, or that it was migraines.

That was a very windy way of saying that there are so many things that docs don't understand, or even want to understand (LOL) about the nervous system. If you think it might be AI, gather evidence (is it worse when you flare?, does bumping up your prednisone help?, does being in the sun make it worse?). Sometimes EMGs (like an EKG for your nerves) can help pinpoint things. The downside that we found, is that if the EMG is normal, the docs wipe their hands of it and move on to the next patient.

Peridot20_Gem
06-02-2011, 03:09 PM
Thanks, for all the information. This is very helpfull. I was just about to post a thread about tingling and burning in legs and feet myself.
thanks everyone :)Hi Twinmama,

I'm glad the threads been able to help in so many ways for you also. xxx

tgal
06-02-2011, 06:12 PM
About 5 years ago my daughter started getting "complex migraines" that looked just like strokes. She would lose her vision, her speech would get slurred, half her face drooped and she'd totally lose use of her right arm and drag her right leg, and her arm was so numb she was injuring herself without knowing it. High doses of prednisone would help, but the neurologist said it was "a placebo effect" and that she only got better because she thought she should get better. As background, we had suspected AI disease and had been to the rheumy several times already. Anywhooo, after all the scans came back negative for MS and stroke, the neurologist took away the prednisone. Her next "migraine" lasted 2 weeks and when she finally quit talking like she was drunk, she had totally lost use of her right arm and drug her right leg. Some days she couldn't walk at all. This lasted for 18 MONTHS. The tide turned when she got a large, painful rash on her back and her PCP gave her a burst of steroids. After a couple days she got a tiny bit of movement back in her pinky finger. We convinced the PCP and rheumy to let her stay on a low dose, and to add Plaquinil. Four months and lots of OT later, she had complete use of her arm (and leg) again. The migraines stopped and she hasn't had an episode since. The docs all said it didn't make any sense because her reflexes and (most) of her labs were normal, but they humored us with the meds. The neuro kept saying it was a psychological problem, but we found out last year that she never charted that, or that it was migraines.

That was a very windy way of saying that there are so many things that docs don't understand, or even want to understand (LOL) about the nervous system. If you think it might be AI, gather evidence (is it worse when you flare?, does bumping up your prednisone help?, does being in the sun make it worse?). Sometimes EMGs (like an EKG for your nerves) can help pinpoint things. The downside that we found, is that if the EMG is normal, the docs wipe their hands of it and move on to the next patient.
I am so sorry for you! I went through something very similar when my daughter was younger.they thought she was having seizures. The big time doctor decided it wasn't seizures it was it was migraines (Insert here that I have migranes and have since I was a child. I had the ones that would make me lose my vision and I am telling you I NEVER did what my daughter was doing!

You are so right about how they handle these things. If they can't find the information in the way they always do it they will not keep looking. Thankfully my daughter doesn't have the blackouts anymore but she has headaches all the time. They told her to try not to take anything to get rid of them because maybe they are "rebound headaches" which happens when you take Tylenol or Advil too often. She didn't take it for about a year and the headaches still come. You know it is bad enough the doctors dismissing me for so long but don't dismiss my child!

Gizmo
06-02-2011, 08:25 PM
You are so right about how they handle these things. If they can't find the information in the way they always do it they will not keep looking. Thankfully my daughter doesn't have the blackouts anymore but she has headaches all the time. They told her to try not to take anything to get rid of them because maybe they are "rebound headaches" which happens when you take Tylenol or Advil too often. She didn't take it for about a year and the headaches still come. You know it is bad enough the doctors dismissing me for so long but don't dismiss my child!

Sing it Sister! I have fought tooth and nail for my daughter and we have taken her to dozens (literally) of specialists. I have a very strong mama bear instinct, but I've found that it is much easier to lay it on the line with a doctor when I am not talking about myself. I am also much more willing to shell out money for tests and treatments for her than for myself.

tgal
06-02-2011, 08:37 PM
About 5 years ago my daughter started getting "complex migraines" that looked just like strokes. She would lose her vision, her speech would get slurred, half her face drooped and she'd totally lose use of her right arm and drag her right leg, and her arm was so numb she was injuring herself without knowing it. High doses of prednisone would help, but the neurologist said it was "a placebo effect" and that she only got better because she thought she should get better. As background, we had suspected AI disease and had been to the rheumy several times already. Anywhooo, after all the scans came back negative for MS and stroke, the neurologist took away the prednisone. Her next "migraine" lasted 2 weeks and when she finally quit talking like she was drunk, she had totally lost use of her right arm and drug her right leg. Some days she couldn't walk at all. This lasted for 18 MONTHS. The tide turned when she got a large, painful rash on her back and her PCP gave her a burst of steroids. After a couple days she got a tiny bit of movement back in her pinky finger. We convinced the PCP and rheumy to let her stay on a low dose, and to add Plaquinil. Four months and lots of OT later, she had complete use of her arm (and leg) again. The migraines stopped and she hasn't had an episode since. The docs all said it didn't make any sense because her reflexes and (most) of her labs were normal, but they humored us with the meds. The neuro kept saying it was a psychological problem, but we found out last year that she never charted that, or that it was migraines.

That was a very windy way of saying that there are so many things that docs don't understand, or even want to understand (LOL) about the nervous system. If you think it might be AI, gather evidence (is it worse when you flare?, does bumping up your prednisone help?, does being in the sun make it worse?). Sometimes EMGs (like an EKG for your nerves) can help pinpoint things. The downside that we found, is that if the EMG is normal, the docs wipe their hands of it and move on to the next patient.

WOW my daughter was diagnosed with that when she had what appeared to be "absence seizures" She had been complaining of headaches but not the traditional migraine then one day she was telling me a story and just went silent and stared off into space for about 45 seconds. When she came out of it she picked up right where she left off in the story and she had no idea that she had missed any time. Of course she went to her doctor who sent her to a neuro that diagnosed her with "rebound headaches" basically saying that her headaches kept coming because she had been taking the Advil and she had been taking the Advil to get rid of the headaches! She stopped taking the Advil but that was 6 years ago and she still has them daily (she went back to taking them). She saw her first Rhuemy when she was 6 due to joint pain. She went to another one last year because the pain became worse.

Like you I watch her go to these people say everything is fine because she doesn't fit into the box correctly. It is frustrating! I am so glad that your daughter is getting better. It is bad enough what we go through I can't imagine watching my daughter go through it. It is one of the many reasons that Susie is my hero. Her strength and dedication to this place and because she is still getting up and putting one foot in front of the other after watching her daughter deal with this disease. I am not so sure I would handle it as well


LOL You know you have brain fog when you basically post the same thing twice! I am so sorry lol

Linda From Australia
06-03-2011, 03:20 AM
tgal, can you please post that again ... I had trouble reading it the first two times, I know if I just read it one more time it will sink in.

Gizmo
06-03-2011, 05:32 AM
WOW my daughter was diagnosed with that when she had what appeared to be "absence seizures" She had been complaining of headaches but not the traditional migraine then one day she was telling me a story and just went silent and stared off into space for about 45 seconds.

Like you I watch her go to these people say everything is fine because she doesn't fit into the box correctly. It is frustrating! I am so glad that your daughter is getting better. It is bad enough what we go through I can't imagine watching my daughter go through it. It is one of the many reasons that Susie is my hero. Her strength and dedication to this place and because she is still getting up and putting one foot in front of the other after watching her daughter deal with this disease. I am not so sure I would handle it as well


LOL You know you have brain fog when you basically post the same thing twice! I am so sorry lol

Wow, Mari, what you are describing with your daughter fits "absence seizures" like it came out of a textbook. Is she still having the seizures or the headaches? Does she take anything for the seizures? Is she old enough to drive (sorry, I haven't figured out everyone's situation yet)? My daughter also saw a rheumy when she was about 6 and started getting classic migraines about then as well.

Actually, my daughter is getting progressively worse - the good news is that she got connected with a study in Texas, but everything they are looking at is totally theoretical and it's brand new territory. This is related to the genetic disorder and dysautonomia, not her AI disease - at least that's what everyone thinks. She is almost house bound and has had to put her college and career dreams on hold.

I must have brainfog, too, 'cause I don't see what you posted twice...

mrstjscott
06-04-2011, 06:42 AM
prednisone (20 mg); aspirin (325); metoprolol (100 mg); lexipril

tgal
06-04-2011, 09:49 AM
Wow, Mari, what you are describing with your daughter fits "absence seizures" like it came out of a textbook. Is she still having the seizures or the headaches? Does she take anything for the seizures? Is she old enough to drive (sorry, I haven't figured out everyone's situation yet)? My daughter also saw a rheumy when she was about 6 and started getting classic migraines about then as well.

Actually, my daughter is getting progressively worse - the good news is that she got connected with a study in Texas, but everything they are looking at is totally theoretical and it's brand new territory. This is related to the genetic disorder and dysautonomia, not her AI disease - at least that's what everyone thinks. She is almost house bound and has had to put her college and career dreams on hold.

I must have brainfog, too, 'cause I don't see what you posted twice...

At the time I had no idea what it was but now, due to my seizures, it does fit perfectly! Those hung around for about 8 months then went away however the headaches have not. No, she is not taking anything for that because no one, even the specialists thinks that they were seizures. They believe they were migraines because apparently seizures and migraines come from the same part of the brain.

Add to that the joint pain she has had since she was 6 (her first rheumy appointment and she went again about 6 months ago) and I have a knot in my stomach. They started her on low dose ammitriptyline for "chronic pain and to help her sleep). She said it is helping with that but every day she ends up with a headache. It is really difficult for me because I believe I wouldn't have become as bad as I am if someone had dealt with this when I first started complaining. I am NOT going to allow this to happen to my child.

OK off the soap box and off to the tup

Peridot20_Gem
06-09-2011, 08:58 AM
Hello mrstjscott,

How are you feeling now any better??...please keep we updated.

Terri xxx

mrstjscott
06-10-2011, 06:22 AM
Hi Terri. I am not feeling to well at the moment. I know the heat has taken a hard toll on me. I slept most of yesterday (with the help of sleeping pills) and today I just feel like blah. I have a bad attitude and I just want to be alone, but not really. Of course, I'm having one of those moments where I feel weepy, scared, unloved, unwanted, unnecessary and whatever else you can think of. LOL.
Arms and hands hurt. Face skin hurts. belly hurts. Ok. Ok. Ok. Enough.
SO, my legs and feet DON'T HURT but my feet are tingling again.
My head DOESN'T HURT!!!
My eyes DON'T HURT!!!
My chest isn't hurting at the moment, basically because I am not doing anything at the moment.
Sorry. I just feel like this. So I do have something to be happy about. I'm alive. I'm in my right mind? LOL. I have a husband who still loves me (I think). I hate the way I treat him sometimes. When I am going through these terrible mood swings, he gets the brunt of it.
Oh boy. IDK. GOD made me so HE knows my kookiness.
I'm feeling kinda gullible right now. I'll be ok. I just need to get this cry out. No real reason to cry. Just feel like I need to. Ok. Enough for today. I sound psychotic.

steve.b
06-10-2011, 06:36 AM
thinking of you. hope the mood changes soon

Peridot20_Gem
06-10-2011, 06:49 AM
Hi mrstjscott,

Sorry you was unwell yesterday but how you've just explained wanting to be alone but not really then expressed your feelings, those are the feelings when my manic depression kicks in and when the aches and pains are doing their job i seem to cry alot, if your like me your feel abandoned and lost.

All you've done mate is vent the lot right out and it helps in someways better than it building up and leading to stress because as you know the lupus feeds off it great, it must adore my depression i bet they're BEST OF FRIENDS.

You don't sound psychotic one bit, well if you am i definitely are, i really hope all goes well refering the nurse also. xxxxxxxxx