Bone, ankle, clavical pain

[Guest guest]

One of the things to remember with sarcoidosis is that it loves the extremities. It is very, very common to have sarc granulomas in and around the joints of our hands, wrists, feet and ankles.

Many times our MD's call it arthritis--and it is--sarcoid induced arthritis.

As far as the bones go-- sarc can be in the bones themself, in the marrow, and on the outside of the bones--much like osteo-arthritis. All it takes is a tiny microscopic granuloma that can't be felt by touch--and is so small, the human eye can't see it on xray--but if that sucker is touching a nerve--the pain can be horrendous.

Also, since the bone marrow is key for blood cell production-- if the blood cells are inflammed-- then you'll have bone pain. also, dehydration plays a key role here also-- too little fluid in the joints, ligaments, in the myelin sheath that covers the muscles and ligaments--and the pressure intensifies, and more pain.

Another key component is that when we've been treated with steroids--prednisone and methyl solumedrol--the calcium and magnesium is sucked out of our bones to be used for other needs--and we become seriously deplete of calcium/magnesium.

This creates a couple of problems-- if our bodies can't get the calcium/mag that it needs--it stores the calcium in other organs. Gallstones, kidney stones, liver--those painful joints, are all related to our body needing to store calcium. Those bone spurs on your feet and ankles and the length of your spine-- are calcium deposits. The problem that many of us have with "carpal tunnel" end up being caused by the granulomas that form in our wrists. (This is why some of us have been told that even tho the test for carpal tunnel was positive--surgery won't work.)

The second problem is that magnesium helps control muscle spasms. So if you don't have the right balance of calcium/magnesium in your body-- whether it's due to medication or being told to stay away from calcium and sunlight-- because of the Vit D issue -- (we need some V D to combat depression--so use common sense) then you'll find the bone and muscle pain increasing.

One of the saving graces I've found is that when my bones really start whacking out-- is to take a couple Calcium tablets (TUMS EX works great)-- and drink some extra water-- and that will help as much as an extra painpill helps most of you.

Weil, MD put together a book about vitamin and mineral defiency that is very good. Also, ARTHRITIS TODAY @ www.arthritis.org has an issue last year that was a Vitamin/Mineral guide. The table in it is excellant to explain what each vitamin does, and how much you need. (They go by RDA--Recommended Daily Allowance), I go by how much it takes to make me feel better--then stop at that level.

As far as the clavical pain-- all around the clavical is a gazillion lymph nodes. These lymphs are happy to host sarcoidosis. They swell, they put pressure on the muscles and ligaments and nerves--and yep, you got it-- Pain!

The answers that work for me were to increase my fluid intake-- water and decaf herbal teas -Peppermint and Chamomile are excellant and won't tear up the tummy with acids-- Milk Thistle capsules and tea are great-- they help to keep the liver detoxed. I also found that OptiMSM POWDER mixed in at a tsp per 1/4 cup of water works wonders.. It's a natural mineral that the MAD scientists decided we didn't need, so it was "engineered" out of our soils and foods by processing (cooking or freezing) so we don't have the advantage of the healing power of this mineral. (Can we all say Drug Company Conspiracy--after all, vitamins, minerals and herbs can't be patented--so there's not alot of money it vs. the Billions of $$$$$ in prescription meds.).

To locate these vitamins and minerals-- go by your local health food store--the one that isn't in the mall-- but has real people who have studied this stuff-- and talk with someone that knows what is a good quality label.

Hope this helps--I've put alot more stuff in the ARCHIVES and in LINKS on these topics--so check those sites out. This is a discussion we've had numerous times--and will have many more times--so don't feel like you can't ask questions--but the info is there--so enjoy. The research can be fun--and Rose has lots of lies(stories) there too.

Blessings,

Tracie

NS Co-owner/moderator

[Guest guest]

Tracie,

Thanks for the info. It is as I thought. I had a bone scan years ago and I had a lot of dark areas on my ribs where the contrast settled. Radiologists read this as old rib fractures. Girl, I have never had a broken rib. Now that the clavicle and all the joints are inflamed I thought this would be a big red flag. Guess what? Nope. Everyone wants to wait until after the neuropsych results are in before they will give me any treatment. I have not see the orthopedist in awhile, I may go back and have him take a peek. He normally doesn't want to touch me with a ten foot pole. He says that thought I don't have rheumatoid arthritis, I have multiple joints involved and he wants rheumatology to treat. Well the rheumatologist just puts it down to osteoarthritis and/or fibromyalgia but never orders any x-rays. The one time he did (on my wrist) it showed something was out of whack and he called it psuedogout. I think my neuro and orthopedic problems are connected (sarcoid) but they just poo-poo any of my suggestions. What is it going to take for them to get with the program. I will be glad to have my next chest CT at the end of this month. My little cough is back and I am sure those lymph nodes are still there; I have also had some SOB.

Well, I am off to my Mom's for a week. I will try to pop on when I can to check in on everyone...she had dial up and I will probably get pissed off and give up. I hate dial up. Well, at least she has a computer.

I hope everyone is taking good care of themselves.

Thanks.

Terri G.

>> One of the things to remember with sarcoidosis is that it loves the > extremities. It is very, very common to have sarc granulomas in and around the joints > of our hands, wrists, feet and ankles. > Many times our MD's call it arthritis--and it is--sarcoid induced arthritis. > > > As far as the bones go-- sarc can be in the bones themself, in the marrow, > and on the outside of the bones--much like osteo-arthritis. All it takes is a > tiny microscopic granuloma that can't be felt by touch--and is so small, the > human eye can't see it on xray--but if that sucker is touching a nerve--the pain > can be horrendous. > > Also, since the bone marrow is key for blood cell production-- if the blood > cells are inflammed-- then you'll have bone pain. also, dehydration plays a > key role here also-- too little fluid in the joints, ligaments, in the myelin > sheath that covers the muscles and ligaments--and the pressure intensifies, and > more pain. > > Another key component is that when we've been treated with > steroids--prednisone and methyl solumedrol--the calcium and magnesium is sucked out of our bones > to be used for other needs--and we become seriously deplete of > calcium/magnesium. > > This creates a couple of problems-- if our bodies can't get the calcium/mag > that it needs--it stores the calcium in other organs. Gallstones, kidney > stones, liver--those painful joints, are all related to our body needing to store > calcium. Those bone spurs on your feet and ankles and the length of your > spine-- are calcium deposits. The problem that many of us have with "carpal > tunnel" end up being caused by the granulomas that form in our wrists. (This is why > some of us have been told that even tho the test for carpal tunnel was > positive--surgery won't work.)> > The second problem is that magnesium helps control muscle spasms. So if you > don't have the right balance of calcium/magnesium in your body-- whether it's > due to medication or being told to stay away from calcium and sunlight-- > because of the Vit D issue -- (we need some V D to combat depression--so use common > sense) then you'll find the bone and muscle pain increasing.> > One of the saving graces I've found is that when my bones really start > whacking out-- is to take a couple Calcium tablets (TUMS EX works great)-- and drink > some extra water-- and that will help as much as an extra painpill helps most > of you. > > Weil, MD put together a book about vitamin and mineral defiency that > is very good. Also, ARTHRITIS TODAY @ www.arthritis.org has an issue last > year that was a Vitamin/Mineral guide. The table in it is excellant to explain > what each vitamin does, and how much you need. (They go by RDA--Recommended > Daily Allowance), I go by how much it takes to make me feel better--then stop at > that level. > > As far as the clavical pain-- all around the clavical is a gazillion lymph > nodes. These lymphs are happy to host sarcoidosis. They swell, they put > pressure on the muscles and ligaments and nerves--and yep, you got it-- Pain!> > The answers that work for me were to increase my fluid intake-- water and > decaf herbal teas -Peppermint and Chamomile are excellant and won't tear up the > tummy with acids-- Milk Thistle capsules and tea are great-- they help to keep > the liver detoxed. I also found that OptiMSM POWDER mixed in at a tsp per > 1/4 cup of water works wonders.. It's a natural mineral that the MAD scientists > decided we didn't need, so it was "engineered" out of our soils and foods by > processing (cooking or freezing) so we don't have the advantage of the > healing power of this mineral. (Can we all say Drug Company Conspiracy--after all, > vitamins, minerals and herbs can't be patented--so there's not alot of money > it vs. the Billions of $$$$$ in prescription meds.). > > To locate these vitamins and minerals-- go by your local health food > store--the one that isn't in the mall-- but has real people who have studied this > stuff-- and talk with someone that knows what is a good quality label. > > Hope this helps--I've put alot more stuff in the ARCHIVES and in LINKS on > these topics--so check those sites out. This is a discussion we've had numerous > times--and will have many more times--so don't feel like you can't ask > questions--but the info is there--so enjoy. The research can be fun--and Rose has > lots of lies(stories) there too.> > Blessings,> Tracie> NS Co-owner/moderator>