hurting legs (restless leg syndrom?)

Last night my legs started hurting really really bad I don't even know how to explain the sensation its almost like my tendons or veins but I know your veins don't really hurt. It tended to feel slightly better to move them and walk around but they have been hurting all day today as well there worse when I sit (relax) or lay down. I have gotten this in the past but just pushed it aside this time its worse. I was wondering if anyone else has this problem and if its related to sarc and or what you do about it????? Thank YOU
~Bobbie

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My legs never stop paining. A dr said I do have restless leg syndrome but I wonder if I move them because of the pain and it is something else. The dr has me take 1 iron tablet OTC a day and it did help. I have stopped it, shame on me. I should go and buy more and try again.

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Hi Bobbie,

My legs were out of control before I realized I had Sarcoid. I believe it can be attributed to high calcium levels or to much vitamin D. I would ask your doctor to draw a blood panel and get those levels tested. Too much calcium in the system can damage certain organs. Good luck..

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I have visible tremors in hands which can sometimes be so bad I cant sign my name. Also visibly in my legs but not usually at the same time. Not visible are the tremors I get throughout especially my head. Yes I have had all the usual tests.

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thank you all so much I did hear it could be a result of low iron I think I will get some blood work done and test for all thos things. Im sorry for all of you sharing in my discomfort. I wish you the best!!!

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I have constant leg discomfort. It is usually worse at night when I am trying to sleep. Pain Meds usually do the trick, or an Ambien. During the day I guess I can just ignore them because I am working an 8 hr day. Stress adds to the discomfort, when I am really stressed it is worse. Hope you all have a good day, Celine

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I have normal calcium/Vit.D readings and I have this leg problem. When I was on Prednisone it settled a lot, but I don't want to take it anymore. It can be the inflammation from sarc, or it could be neuro sarc. What does your doctor say?
At the moment I am going extremely well just by adding a lot of anti-inflammatory foods to my diet and avoiding stress. Sometimes, when I know that I am going to have a bad night I do take a low dose of soluble aspirin. This just relieves it slightly but I don't want to become sicker from the many drugs that are available than I am from Sarcoidosis.

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Hello, This is the first time I have ever written anything on here but I had to tell you my experience. I had severe leg pain before I was diagnosed. Turns out I have bone lesions. They are bad enough that at 29 I am on osteoporosis meds to fill in the holes. I would reccomend looking into it for sure.

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I have the leg pain and sometimes arm pain as well and was diagnosed with vasculitis as well as sarcoid. The treatment is the same as for the sarcoid...anti-inflammatory drugs like Relafen. My doctor said sarcoid can cause vasculitis or vice versa.

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Im glad you brought this up. I have the same thing going on. I never heard of the low iron thing,but i have been told in the past I was anemic, and I did take iron for a bit,but stopped. Maybe I will try again. Krissy, you mention anti-infammatory foods, could you give some examples?

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Hi carolAnn2,
There was an excellent diet especially for Sarcoidosis put on this site recently. I noticed that it was almost identical to how I eat anyway, so I gave myself a pat on the back.
Firstly, it would be a good thing for you to check with your doctor to make sure that you don't have Vit.D or calcium issues.
See if you can find the diet on this site. I believe in consuming as much Omega 3 oil as I possibly can. I juice every day, usually apple, carrot, celery, beetroot & fresh ginger root. I eat lots of different nuts, especially walnuts, as they are high in omega 3's. I have atlantic salmon at least twice weekly but I supplement with fish oil capsules. Fish oil is now the only supplement I take. It is high in Omega3 but many people with sarc cannot have it because of Vitamin D. I eat an enormous amount of vegetables and at least two serves of fruit daily. I totally avoid preservatives, commercial stocks & artificial sweeteners and I make everything fresh. If I eat preservatives or MSG or too much sugar, this = pain.
I can't wait for my next lot of blood tests. I had a bad patch over Christmas. Since then every day I seem a little better with less fatigue, brain fog & pain.
The festive season meant consuming things that I wouldn't normally. It is interesting that about the time I was feeling terrible I had been trying gluten free, but I am very active and I wasn't happy with the sources of unprocessed, low G.I. carbohydrate. I have been improving since I went back to my normal eating.
The leg pain & restless legs was one of my first symptoms, years before diagnosis.
Good luck, Krissy.

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I have saved this from another Sarcie but drs and I have found that taking 1 capsule 3x a day helps a lot with joint pain and I stopped and ouch:

By popular demand - here is the highlights with the why and wherefores for an anti-inflammatory diet that Norwegian diet experts have put together for the Norwegian sarcoidosis association.

Important factors:
Stay away from Omega-6: This fatty acid worsens inflammation. It can be found in shortening, some oils (eg. sunflower oil) and bread.

Do eat more Omega-3: This fatty acid is anti inflammatory. Most people take this in pill form, and you can take as much as 2-3 grams a day. It's naturally found in fat fish like mackerel.

Stay away from artificial trans-fat: It worsens inflammation and disturbs the natural way omega 3 and 6 are distributed in your body. Trans-fat can be found in cookies, baked goods that you buy at the store, deep fried products.

Eat little carbohydrates that are high in GI: This is just a fancy way to say; Stay away from sugar and starch (like white rice and pasta). This is because lots of carbohydrates will increase insulin in your body, and this in turn increases inflammation.

Eat enough protein: Protein balances you diet and will make sure you don't have huge blood-sugar-swings (because those gives you high production of insulin). Protein rich foods are meat, fish, shrimps and other shellfish and eggs.

Eat plenty of anti-oxidants: This ensures that fat and other food doesn't "turn harsh/old" in your body and it protects cells. Anti-oxidants are naturally found in spices, herbs, berries, vegetables, fruit, nuts and cocoa.


This diet also has a few other highlights:
- Make sure you have good bowel movements - this will help your immune system.
- Do eat plenty of extra virgin olive oil - it's rich in anti-inflammatory and painkilling ingredients. Make sure that it's cold pressed/extra virgin.


Ok - that was the nitty-gritty fact stuff. It's always hard to find out what that would mean for you and your diet. Setting up a diet plan is never easy! Here are in list-form foods that are good for you, food that is ok, and food you should eat little of.

Good foods:
All vegetables (salads, baked, wok, stew etc)
Berries (without sugar)
All kinds of fruit
Herbs, spices
70% cocoa
Fat fish
Lean fish
Extra virgin olive oil
Raw nuts, seeds and almonds
Chicken, hen, turkey
Beef, pork chops, roast beef, ham
Eggs
Cottage cheese
Shrimps and shell fish

Ok to eat:
Beans, peas, lentils
Whole seeds
Soy flakes
Sour milk (not milk that has gone bad! but the one that's good for you)
Yogurt that doesn't have sugar
Butter
Yellow cheeses
Some cream
Boiled potatoes
Brown rice, wild rice
Juice made from fruit and berries
Drinks without sugar
Fructose, some honey, splenda (artificial sweetener without aspartame)

Things to avoid/eat less of:
Sugar
Soda, iced tea, soft drinks, juice with sugar
Candy (all kinds)
Cookies and store bought cakes
Fries, mashed potatoes (from a bag), salty snacks
Deep fried food
Baguettes, chapatti, fine bread
Pizza, pai, pita, pancakes
Sausages
All kinds of shortening, also in liquids
Regular soy oil, sun flower oil, corn oil
Caviar, mayo, salads with mayo
Yogurt to drink, sugared yogurt
Chocolate milk and other sweetened milk
Pasta and regular rice
Brown cheese, jam, chocolate spread
Beer, non-alcohol beer, light beer, sweet drinks, liquor and spirits

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Unfortunately I have IBS so most of those recommended foods I can't have. Hopefully I will have some answers to "shaky legs" next week after my admittance to the sarcoidosis unit.

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yes i have leg pain also somtimes i have to get up at night and rub down with achol and i take omega 3 also ty with arithous 650 grams it helps margie58

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I had restless leg syndrome since childhood. It used to come and go when I was younger and then it stayed, when I got to about age 40. RLS is the irresistable urge to move your legs...or arms. Think of it as a tic. It is not something you can stop. I required Mirapex (pramipexole). The drug may very depending on country. Ropinerole is another drug.

It was so exhausting that it kept me up until 4am. Now it is gone for the most part, but, I am past menopause and have a high ferritin and am on opiates.

Many drugs cause RLS. Any drug which is anticholinergic, (many cold medications, muscle relaxants etc), all antidopaminergics, such as metaclopromide, reglan etc, also the antipsychotics like abilify, risperdal, haldol etc which are antidopaminergic, and finally, the SSRI antidepressant group.

If it is really bad, dopamine agonists, given at much lower doses than for Parkinson's disease will relieve it. It is important that they be given at much lower doses or you will feel too ill to take them. They are given once, at bedtime, and a low dose (not several times during the day) Other drugs that can help are clonazepam, opiates, and for some gabapentin.

Don't guess if this is what you have, get the testing.

Also, low ferritin, not just low hemoglobin or hematocrit, will cause RLS. You can get your ferritin done with a simple blood test. Insist on ferritin level. You can have normal hemoglobin and hematocrit and abnormal ferritin. It can be very hard to get your ferritin level up, but you can try. First find out if it is low however, if it is not low, you don't want extra iron.

RLS is associated with peripheral neuropathy. The best test for this is an epidermal nerve fiber density test, a simple skin punch, which allows a count of nerve fibers. You can have neuropathy and have normal EMGs.

RLS was one of my first symptoms. RLS is not painful, altho neuropathy can be. RLS will not allow you to rest at all. You will likely have to dorsiflex your leg every few seconds, almost rhythmically. This is often accompanied by PLMD, periodic limb movement disorder, while you are asleep. A polysomnogram will diagnose this once and for all.

True RLS is not comforted by any OTC medication. www.wemove.org has good info.

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Yes Bobbie mine hurt all the time. Doc has me on muscle relaxers and Lortab for the pain.

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