Re: Muscle pain and spasm.

[Guest guest]

Some of the biggest problems with sarcoidosis is the invasiveness of muscles and joints and ligaments. Like you, I suffer from this also-- throughout the full length of my body. What I discovered through trial and error-- and all the medications Western medicine has to offer is that much of my muscle and ligament pain, as well as the bone pain-- was that it was directly linked to my blood sugars-- and since I too have spent a lifetime on prednisone and solumedrol, first for chronic sinus and respiratory infections as a kid, as well as throughout my adulthood (I'm 51), my adrenals are totally burned out.

Even though 10% of sarcoidians have a problem with too much of a specific PART of vitamin D assimilation, most of us dont. I found that I have to add a small amount of calcium to my diet, as well as MSM. Both of these are essential for muscle and ligament health. Both have been totally zapped from our bones, and since our bodies are deplete, what happens is that our metabolism then tells our system to suck them from the marrow in the bones-- and your bones HURT!! Since there is no calcium/magnesium (you have to have magnesium to assimilate calcium) to get from the marrow, or I should say very little, your bones hurt. Not only that, but because we are deficient in these minerals, the first thing our body wants to do is store the calcium in weird places-- so that it is no longer starved for them.

MSM is a natural mineral that was engineered away from our foods- back in the stone ages (20+ years ago) it was thought that this was a non-essential mineral, so we don't even add it back into the soil from which our food grows. It also is broken down by cooking, freezing, microwaving, and processing our foods. So if there was even a trace element, it's gone by the time we eat the food.

The other missing component(s) are Vitamin B's. Our medications all create a V-B defiency, so we seriously need to add Folic Acid to our immunosuppresant therapy. This will eliminate the anemias we so easily come up with. B vitamins act as a natural muscle relaxants--and recent studies show that Parkinsons patients in particular do not process Vit B correctly, and it adds to the problems of muscle rigidity and spasm. Vitamin B stabilizes moods so it will help with the depression- it won't cure it- so don't stop your anti-depressants.

Vitamin C is also essential for muscle health. It is a natural anti-inflammatory. Licorice is also a muscle relaxant.

The other insults are refined sugars, our pancreas has taken a huge hit with the steroids. Diabetes or Hypoglycemia (low blood sugar) both create neuropathy. So get them under control. Caffeine is a direutic, as are sodas and juices that have High Fructose Corn Syrup this is actually a direct hit on the blood sugar). So it's decaf teas, water and natural juice at low amounts, because if you do have blood sugar problems, fruit juice spikes your blood sugars. (You are better off with a piece of fruit as it has the fiber and releases blood sugar more slowly).

HYDRATION is HUGE! If you are in the least bit dehydrated, your muscles tighten, your ligaments spasm, and your joints can't float in synovial fluid-- because you don't have enough synovial fluid in your joints. Those of us with damage to the myelin sheath that surrounds our muscles and keeps them lubricated have to pay very close attention to hydration. Keep a diary of what you drink each day, and see how little you are actually putting into your body-- and you will be surprised. This little adjustment will make you so much more comfortable.

Guided mediatation tapes, where you are walked into a deep relaxation can really help with pain. I have several that I love and use weekly, and I've also done posts on Relaxation techniques you can find in our ARCHIVES.

These were all things I had to learn when I ended up in the Auburn Pain and Medical Rehabilatation Clinic in Auburn California. I was dependent on pain medications --to a point of addiction. Outside of my Motrin 800mg 2x day, Flexeril 10mg daily, Effexor XR, Synthroid, Cozaar for blood pressure, Glucophage for blood sugar, Plaquenil for muscle and joint pain (btw, this is hydroxychloroquinine) quinine was used for scurvy(lack of Vit C) and the pain it causes to the body; Methotrexate 15mg week for sarc pain, and Remicade every 28 days, along with Folic Acid 1mg daily. I am not on any OPOIDS or narcotics for pain!

My information that I share with you comes from WWW.arthritis.org and THE HERBAL DRUGSTORE by White, MD. I also use Weil, M.D.'s books as well as SUPERFOODS, RX. These have all been such a store of education on how to continue to live with chronic pain and chronic illness.

I do hope this helps, I know it has kept me still moving -- and even now, I have to pay close attention to all this information and APPLY it-- or I'm in pain. So-- I'm off to figure out why I'm slightly dehydrated right now- and paying for it! lol...

Sincerely,

Tracie

NS Co-owner/moderator

Recently diagnosed with Neurosarcoidosis-What to do about pain?

I've been suffering for about 10 years now with pins & needles from my toes to my chest and from my fingers to my neck, bone grinding pain in every joint, especially my hip sockets, stabbing pains through out every muscle, electrical jolts up and down my spine through to my legs, arms and head, facial palsy, tremors, urinary hesitency and urgency, muscle spasams throughout my body, headaches, blurry vision, buzzing crackle in my ears, burning pain all over my skin, a strange painful stiffness in my spine and muscles.Well, at first I was diagnosed as having too much stress in my life; then diagnosed as depressed and psychotic.Then I had a seizure, a spinal tap was done and was diagnosed with neuro-lyme disease, spinal meningites and possible multiple sclerosis.After a year of IV & oral antibiotics I was still not well. I continued my search for an answer; which ended up being

Multiple Sclerosis. I was treated with Copaxone with no relief, but many different doctors didn't want to try anything else because they questioned my diagnosis, but did nothing to find answers to their questions.I've found a new neurologist who has sent me for numerous tests and he comes up with Multiple Sclerosis with a twist. I also have neurosarcoidosis. He's been trying to treat the pain with different anti-seizure, anti-convulsants, diabetic type meds, restless leg syndrome meds, anti-anxiety and depression meds; to no avail. The side effects are horrible and cause more problems. Has anyone found anything the helps with the kinds of pains I've described above?Thanks,

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[Guest guest]

Tracie, Thank you for all the great information, I wish I could just remember it all but think I should print it out. You are so right about the hydration, If I don't drink enough I can feel it, and I just recently realized that eating too much chocolate (which I didn't thing was possible) I just don't feel good, lack of energy and just kind of a yuk feeling, so thank you again. Marla

Some of the biggest problems with sarcoidosis is the invasiveness of muscles and joints and ligaments. Like you, I suffer from this also-- throughout the full length of my body. What I discovered through trial and error-- and all the medications Western medicine has to offer is that much of my muscle and ligament pain, as well as the bone pain-- was that it was directly linked to my blood sugars-- and since I too have spent a lifetime on prednisone and solumedrol, first for chronic sinus and respiratory infections as a kid, as well as throughout my adulthood (I'm 51), my adrenals are totally burned out.

Even though 10% of sarcoidians have a problem with too much of a specific PART of vitamin D assimilation, most of us dont. I found that I have to add a small amount of calcium to my diet, as well as MSM. Both of these are essential for muscle and ligament health. Both have been totally zapped from our bones, and since our bodies are deplete, what happens is that our metabolism then tells our system to suck them from the marrow in the bones-- and your bones HURT!! Since there is no calcium/magnesium (you have to have magnesium to assimilate calcium) to get from the marrow, or I should say very little, your bones hurt. Not only that, but because we are deficient in these minerals, the first thing our body wants to do is store the calcium in weird places-- so that it is no longer starved for them.

MSM is a natural mineral that was engineered away from our foods- back in the stone ages (20+ years ago) it was thought that this was a non-essential mineral, so we don't even add it back into the soil from which our food grows. It also is broken down by cooking, freezing, microwaving, and processing our foods. So if there was even a trace element, it's gone by the time we eat the food.

The other missing component(s) are Vitamin B's. Our medications all create a V-B defiency, so we seriously need to add Folic Acid to our immunosuppresant therapy. This will eliminate the anemias we so easily come up with. B vitamins act as a natural muscle relaxants--and recent studies show that Parkinsons patients in particular do not process Vit B correctly, and it adds to the problems of muscle rigidity and spasm. Vitamin B stabilizes moods so it will help with the depression- it won't cure it- so don't stop your anti-depressants.

Vitamin C is also essential for muscle health. It is a natural anti-inflammatory. Licorice is also a muscle relaxant.

The other insults are refined sugars, our pancreas has taken a huge hit with the steroids. Diabetes or Hypoglycemia (low blood sugar) both create neuropathy. So get them under control. Caffeine is a direutic, as are sodas and juices that have High Fructose Corn Syrup this is actually a direct hit on the blood sugar). So it's decaf teas, water and natural juice at low amounts, because if you do have blood sugar problems, fruit juice spikes your blood sugars. (You are better off with a piece of fruit as it has the fiber and releases blood sugar more slowly).

HYDRATION is HUGE! If you are in the least bit dehydrated, your muscles tighten, your ligaments spasm, and your joints can't float in synovial fluid-- because you don't have enough synovial fluid in your joints. Those of us with damage to the myelin sheath that surrounds our muscles and keeps them lubricated have to pay very close attention to hydration. Keep a diary of what you drink each day, and see how little you are actually putting into your body-- and you will be surprised. This little adjustment will make you so much more comfortable.

Guided mediatation tapes, where you are walked into a deep relaxation can really help with pain. I have several that I love and use weekly, and I've also done posts on Relaxation techniques you can find in our ARCHIVES.

These were all things I had to learn when I ended up in the Auburn Pain and Medical Rehabilatation Clinic in Auburn California. I was dependent on pain medications --to a point of addiction. Outside of my Motrin 800mg 2x day, Flexeril 10mg daily, Effexor XR, Synthroid, Cozaar for blood pressure, Glucophage for blood sugar, Plaquenil for muscle and joint pain (btw, this is hydroxychloroquinine) quinine was used for scurvy(lack of Vit C) and the pain it causes to the body; Methotrexate 15mg week for sarc pain, and Remicade every 28 days, along with Folic Acid 1mg daily. I am not on any OPOIDS or narcotics for pain!

My information that I share with you comes from WWW.arthritis.org and THE HERBAL DRUGSTORE by White, MD. I also use Weil, M.D.'s books as well as SUPERFOODS, RX. These have all been such a store of education on how to continue to live with chronic pain and chronic illness.

I do hope this helps, I know it has kept me still moving -- and even now, I have to pay close attention to all this information and APPLY it-- or I'm in pain. So-- I'm off to figure out why I'm slightly dehydrated right now- and paying for it! lol...

Sincerely,

Tracie

NS Co-owner/moderator

Recently diagnosed with Neurosarcoidosis-What to do about pain?

I've been suffering for about 10 years now with pins & needles from my toes to my chest and from my fingers to my neck, bone grinding pain in every joint, especially my hip sockets, stabbing pains

through out every muscle, electrical jolts up and down my spine through to my legs, arms and head, facial palsy, tremors, urinary hesitency and urgency, muscle spasams throughout my body, headaches, blurry vision, buzzing crackle in my ears, burning pain all over my

skin, a strange painful stiffness in my spine and muscles.Well, at first I was diagnosed as having too much stress in my life; then diagnosed as depressed and psychotic.Then I had a seizure, a spinal tap was done and was diagnosed with

neuro-lyme disease, spinal meningites and possible multiple sclerosis.After a year of IV & oral antibiotics I was still not well. I continued my search for an answer; which ended up being

Multiple Sclerosis. I was treated with Copaxone with no relief, but many different doctors didn't want to try anything else because they questioned my diagnosis, but did nothing to find answers to their

questions.I've found a new neurologist who has sent me for numerous tests and he comes up with Multiple Sclerosis with a twist. I also have neurosarcoidosis. He's been trying to treat the pain with different

anti-seizure, anti-convulsants, diabetic type meds, restless leg syndrome meds, anti-anxiety and depression meds; to no avail. The side effects are horrible and cause more problems. Has anyone found anything the helps with the kinds of pains I've described above?

Thanks,

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer