Posted , 5 users are following.

ive had some peaks & troughs with this thing

atm I'm feeling ok except the leg pain In my calf muscles & thighs - has anyone else had this?! Sometimes I think I'm going mad, so it's good to see if others have had the same thing?! My legs are ridged at the bottom when I wake in the morning but loosen up as I move around - also my upper legs are sore too but sometimes feel tingly / prickly?! Any feedback would be great



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  • Posted

    Bless ya.

    My legs have always been the worst..my tighs feel like they are being squeezed .my ankles are always stiff 24/7 aswell sad just above my hips are painful to touch.. In fact my entire body hurts to touch.i do get a bit fed up as I'm 32 and this has all started since I was diagnosed with sarcoidosis sept last yr and spent a week in hosptial. I've given up work due to feeling exhausted most days. I've been on amitriptyline but when I ran out I started getting the jumpy pains again.

    It is nice to chat to people who can relate xx

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    • Posted

      Hiya! emma yes stiffness in the legs does suck a lot doesn't it

      sounds like u have had it bad

      im only 37 - was very surprised when diagnosed but mines in lungs in lymph - the aches n pains only came on 18 months after.

      i don't take meds but I do get real tired days when I feel like crap but I just seem to go into auto pilot & carry on regardless! Do ur legs feel restless or have a strange tingly sensation at all? Like when you have shaved ur legs?!its a weird feeling but apart from the stiffness luckily I've not had too much ain. Have ur symptoms got better with meds?

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    • Posted

      Yeah mine started in my lungs but seem to have gotten better especially to how it was rolleyes scary with the breathlessness isn't it! I'm no where as bad and alot of poor people on here sad

      Yes I get the tingling sensations and these random pains.It used to be in my ribs but now it's my legs ..I'll be sitting there watching tv and suddenly get this weird stabbing pain in my tigh!haha it makes me jump.

      The amitriptyline does seem to help me sleep abit better (as I get really vivid dreams)and wake up alot .I've got an appointment next week and I may ask to possibly up the dosage as I'm only on 10mg. only been on them since last month.

      Bless ya I know what u mean about auto pilot!have to carry on for my kids but the tiredness is horrible isn't it??u go in a daze and can't function sad big hugs xxxx

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    • Posted

      Have you got pain everywhere u touch on your body??I've been told I may have fibromyalgia aswell as sarcoidosis (they do go hand in hand apparently ) but they can't rule out its the sarcoid causing my leg pain as they don't know much about sarcoidosis? ?its all crap rolleyes xxx
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  • Posted

    Hi Caz,

    I'm not a doctor, but in my opinion, you should see a specialist tjust to make sure that your pain isn't caused by something else. I've been dealing with this condition for the past 11 years or so, but I've never had muscle/joint pain. Your pain could be caused by calcium deficiency, which could be the result of taking prednisone or other corticosteroid drugs.

    I also have low calcium levels; fortunately, I have regular blood tests (for my thyroid condition) and take calcium supplements to correct calcium deficiency as soon as it occurs. The fact that I check calcium levels every few months saved me from osteoporosis, according to my doctor.

    Most doctors think that young people are quite healthy (even if we suffer from sarcoidosis and take prednisolone, which can deplete calcium) and never ask us to have our calcium levels checked. I know many young people, especially women, who suffer from osteoporosis, which can be very painful, because their doctors never asked them to check calcium and vit D levels in the blood....

    On the other side, you can have a cartilage disorder; in this case, there are special supplements that can help. I think it's worth a try...

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  • Posted

    I get pains in my legs, particularly my thighs. It's difficult to say for me if it's related to the Sarcoid as I've had sooo many DVTs and phlebitis, and amcurrently battling two leg ulcers and am in compression- BUT- despite the aches and pains I get from them, I do occasionally get sudden, from nowhere, stabbing pains in my upper legs. They tend to last maybe twenty seconds then vanish but can happen a few times a day/week. I would say get it checked out but it's interesting to know others get this!

    Someone else mentioned on here about calcium levels and potential problems with bones, and also mentioned vitamin D.

    I recently paid to have a full range of blood tests done and, while my calcium is fine and my thyroid seems to have corrected itself (can it do that?), My vitamin D was.. erm.. a bit low.. it was 17 O.O I wonder if there's correlation between Sarcoid and Vitamin D? I've heard of it with calcium, but my Uncle with Sarcoid has waaay too much calcium. Strange how it all flows!

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  • Posted


    I have it in my legs. Started of getting more and more stiff all over. In the end my feet got so bad I couldn't walk with great big red welts on my legs. They then diagnosed sarcoids. 30mg of steroids sorted me out in days. Remarkable! But left me with tired itchy scratchy legs. Haven't had another attack since but I'm waiting for it😁

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