Muscle Sarcoidosis

Hello everybody yesterday I went to the doctor and got some more bad news. I found out I have muscle sarcoidosis on my left side. My muscle are inflamed and my medication as been increased. Just wonder if any knows anything about muscle sarcoidosis.

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Hi Marshawn,
What were your symptoms and which kind of doctor finally diagnosed it? I've said for years that my muscles ache all the way to the bone, from head to toe, but the docs basically stopped looking for other areas when they found it in my lungs and lymph system. Basically, they said, you have it...now here are your steroids. My Rheumy is taking an interest now, and wants to put me on Humira, but my insurance will not pay for it and it would cost me $1800/month (sorry, can't do it).

Anyway, I'm interested in how you came about the diagnosis and who you had to talk to to get them to think about it.

thanks! and I hope you feel well.

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have not heard of this one. What exactly are your symptoms? I have a lot of pain in my right leg/thigh/hip area. Doing exercises but not so good yet. Sometimes I can hardly get up after sitting or laying down.
Thanks

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I have granulomas in my muscles and soft tissue. It causes inflammation and arthritis. The last week or so I have eaten things I shouldn't have and my muscles are hurting again in my thighs. It feels like bad cramps and after a little walking my legs get so week...it feels like a massive burn you get when you really work out to extreme - almost. Since I ate fast food/rubbish my vision has become very blurry as well. O well.... I learned my lesson I guess.

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I have residual muscle weakness deficits from neuro sarc. Unsteady gait, poor balance, weakness in hands, arms, neck, torso, back and both legs. Stairs and curbs are difficult ( at times needed a cane), can't walk 50 paces without thigh muscles burning and SOB, very slow eater, slow swallow, tired jaw, etc.

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Hi every body I had s doctor apointment with my Neon and had me take a test that check my muscle and nerve fuction. My nerves were fine but must muscle are badly inflamed. And the doctor that took my test and my doctor stated from what they can see and my system there is sarcoidosis in my muscle
I dofell better now that my medication has been change. I did have pain and stiffness in my legs, shoulders on my left side

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I was diagnosed with sarcoidosis myostitis which is muscle sarc. It is quite painful. It makes me feel like I have just run a marathon all the time. The symptoms were mainly muscle fatigue and muscle pain. It took a few years but nowt the symptoms from this have subsided. I still get a mild attack of this occasionally but it is much more bearable. I found the best remedy for the pain was to follow the anti-inflammatory diet. I was actually on prednisone for about a year at the same time I was suffering the worst of this but pred did not relieve it and also seemed to make my muscles feel weaker.
I am a former athlete and I work as a fitness trainer. I am still very active and even though I struggled, I did not give up on exercise. At times this muscle problem was agony and I would give in to feeling sorry for myself but most of the time I forced myself to struggle on. I don't know if this is the reason that I now have relief from this dreadful symptom but I suspect it is.
I just really wanted to tell you that I hope it goes away for you as well.
I also want to say that resting and not being active only made the pain and stiffness worse.

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Please pass on the anti inflam diet. New here didn't realize I wasn't alone in this, is it me or are you all working harder than your doctors for answers?

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Hi Krissy, I just want to say that I admire your perseverance through painful sarc
I am a marathon runner currently in training for a November race and have recently started having bouts of sarc related pleurisy. The pain, at times, is horrific and I need to take a small dose of narcotic to get some sleep. It hasn't effected my training so far, and I only take it when absolutely necessary.
I was just wondering, since you too remained very active during painful sarc, if you ever needed pain control and how it effected your physicality.
Thanks,
Judy

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There have been several diet discussions on this site; you can use the search box to find them. I follow "The Complete Idiot's Guide to The Anti-inflammation Diet", by Christopher P. Cannon, MD and Elizabeth Vierck. You may find good sources online, also.

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No one has ever told me I have muscle sarc but I bet I do in some capacity. I ache a lot (hips, legs, feet) and the one thing I know is that it is worse when I am not working out.
I do these exercises that you can get on YouTube called Intuflow, there is a beginner, intermediate and advanced series. They help with joint mobility and have made a lot of my joint pain go away. When I slack off, I ache! This is the web site http://intu-flow.com but you can see the series on YouTube (for free!)
And it's always good when Krissy answers a question, she has been a big inspiration and help to me!

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This is something I need to find out more about. I keep telling my rheu doc that I have something more then just fibro in my muscles. He will not listen to me, just does the basic "pat on the head" and tells me it is just the fibro getting worse. The pain I feel is a thousand times worse then fibro has ever been for me. Weakness, bad balance, etc. I use to get granulomas pretty bad on my limbs but with meds they are mild now. I found a hospital out in Seattle that has a doc that specializes in Sarc...has anyone ever gone there? I know National Jewish is closer to me as well but my understanding they deal more with lung sarc?? Can anyone shed more light on that?

NikkiAnne

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I am new to the site. I was diagnosed with pulmonary sarc in April 2010 at age 47 by lung biopsy while having heart bypass surgery. I have not required any treatment although I have multiple nodules (+30) in both lungs. In Nov I had a stroke like event that was later diagnosed as a migraine disorder, but is now questionable as I am continuing to have paralysis issues without headaches. My general physician suspects neuro sarc and I am scheduled to go to Cleveland Clinic on Sept 12. Now I am also experiencing extreme muscle pain in my legs and arms. My question is how did they diagnose the muscle sarc?

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Hi Krissy, please share where you found out about the anti-inflamatory diet.

Marshawn, I am praying for you....I have muscle sarc too....it is no fun.
I appreciate this site so very much.
pjr

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There are quite a few of you who have responded to my comments and I am not at all surprised. Firstly I would like to say that for most of the time the diagnosis of fibromyalgia is incorrect when sarc is involved. My specialist told me that many doctors tell their patients that they have this because they are either sceptical and don't really believe them about the pain or they don't know and they are fobbing them off. It is not fair because it has given fibromyalgia a bad name and it is a true illness. Most people with sarc usually don't have true fibromyalgia and a good way to find out whether your doc is one of the sceptical ones is this very important fact - fibromyalgia symptoms do not respond to prednisone. If your doc has prescribed pred to deal with your pain and it is working 1) He doesn't understand about true fibromyalgia not responding to pred and 2) You obviously do not have fibromyalgia if it is responding to pred. Although I have said this, you can have both fibromyalgia and sarcoidosis at the same time but it is more likely sarcoidosis causing the pain you are suffering and not fibro.
There are a few ways and reasons for pain with sarcoidosis. Sarcoidosis is an inflammatory illness. Inflammation is painful and does give you an arthralgic type of pain. I test negative for arthritis. Unless you actually have sarc nodules in your muscles a biopsy is pretty much a waste of time. Many of you are describing your larger muscles as painful, ie. thighs . That sounds pretty much like me. At the height of my suffering my forearms were so painful that I had trouble lifting myself out of bed in the morning. You can clearly feel it as a muscle pain and not a joint or bone pain. Getting started after resting or sitting still for any amount of time was agony.
I was also asked about pain relief. I took prednisone for approximately 12 months after my initial diagnosis and I don't ever want to touch that stuff again. I have a very high pain threshold. Remember, I was an elite marathon runner. This means I can tolerate a fair amount of pain and I am trying to resist pain medication although it has been offered to me. I do occasionally take a short course of anti-inflammatories (Mobic) if my inflammation is just too much to bear but for no more than 5 days in a row. Sometimes I go for six months or more without any Mobic. There is a health price to pay with any drug that we take and the important thing is to way up the value of the drug against health effects and make an informed decision.
I was also asked about the anti-inflammatory diet that I follow. Firstly, I have some food triggers that I have found bring on my symptoms and this is the short list:- Processed foods, too much sugar, preservatives, flavour enhancers (eg. MSG), commercial stocks, trans fats. The Norweigian Sarcoidosis Diet has been posted here and this is very good. You can also google The Revised Mediterranian Food Pyramid and this is the now the scientifically accepted way that most people should eat, so eating this way is good for your whole family.
There are also many foods that have strong anti-inflammatory benefits, such as:- Foods containing omega 3 fatty acids, ie. Oily fish and fish oil, chia seeds, walnuts, etc.
Just quickly, here are some other foods that I try to eat regularly which really help:- ginger, cherries (dried, fresh & frozen), berries, pineapple and especially the hard center, apples, onions, celery. This is only the short list but you can google foods that have anti-inflammatory properties.
The other important thing that I would like to say to you is eat as many fresh fruits and vegetables and a lot of variety. Get tested to see if you suffer with arthritis and if you are negative don't restrict yourself because the arthritis anti-inflammatory diet that most naturopaths, etc. recommend eliminate acidic foods. Sarkies don't have a problem with these fruits and vegetables and many of them are extremely good for us. Pineapple and tomatoes are a good example.
Although I have said all of this and I truly hope that I have helped some of you I believe that reading and educating yourself by learning about your body and health is a good thing. If you read conflicting reports as often happens, keep reading and learning and observing your own body. Don't be afraid to question any advice given and work things out for yourself.
At one stage I was spending more than $100 weekly on supplements but I actually found that I do better without them. This is also why my diet has to be varied and well rounded.
I just want to give you hope and say that although the myositis has not completely gone, the symptoms are minimal compared to how they were and I actually have times when I am almost pain free.
I know that many of you are too ill or in too much pain to consider hard exercise but still try to be as active as you can. New research is showing an amazing brain/body connection. If you rest all the time your brain is receiving the message that you are very ill or waiting to die. Try to send a more positive and rebellious message!
I hope this gives you some light at the end of the pain tunnel.

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Funny you mention the thighs being swelled. Mine has been seemed for over 15 months. I was told by one set of drs it was a side affect of prednisone, another set of orthro docs bruitis. Now it's moving down my leg. I'm having problems continuing my 'recommended exercise for my lungs. I take mobic randomly when I can't stand it any longer as messes with my acid reflux. We have had that talk before.

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I have the same symptoms my right leg, hip, thigh, burning numbness tingling feels like it's in my bones go to see a nuero next month

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I have the tingling in my arms, legs, hands & feet and this is peripheral neuropathy. Very unpleasant and wakes me up frequently. It is worse when I try to sleep or sit still for any length of time. I am constantly on the move because I actually feel better when I am moving.

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I also have trochanteric bursitis in both hips, especially the left. It only gives me grief now when my inflammation is high. The bursa is a fluid filled sac between your trochanta & your hip. Sarc inflammation can attack us anywhere.

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Mine is on the outside more in my upper thigh. I have noticed recently it's running down my leg to my knee and left foot. Guess I will soon be back visiting my ortho doc. My last visit was a cortisone shot that left me in tears. Gotta love these random presents. I too make it a habit of going to the gym at least 4 times a week. As it was recommended to build up and keep up my lung function for the next attack.

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I used to have that kind of pain and it's awful. Sometimes that pain is also associated with sciatica. It wasn't sciatica with me. It was more that sarc inflammation was causing my piriformus muscle in my butt grief and it was sending referred pain down the leg, the same pathway as you describe and even hurting under the arch of my foot. I had it for several years but it is not bothering me now.

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