Hi mommies! It does feel very much like the flu to me too. Doesn't always get worse at night liek the flu does though. Most of the time it seems to move around. I always have pain in my neck (and no, it's not my husband! LOL. I left him for 6 months. The pain was still there so I came back. Hahaha). I have had xrays, cat scan's etc but no one can find anything. I know they treat sarcoid with steroids so that could be why the lumps on your neck went away. Unfortunately sarcoid doesn't 'settle' in one place. It's has traveled through your entire body and left a little bit behind to remind you from time to time. It's quite frustrating. I am not currently taking anything for the pain because they have found something else wrong & are not sure what I can take yet until the get the meds straightened out for the other diagnosis. Doesd anything help your pain?

I told my PCP that i always feel like i have the flu (joint and mucle pain, low grade fevers, swollen lymph noes, ect) thats why they thought i had fibro for a long time.

When people ask me what its like to be chronically ill i tell them "its just like having the flue ALL THE TIME" LOL

its so nice to know i'm not alone

Hi doubledeez, LOL Pain in the neck after 6 months I guess your right haha.For pain I take Dilaudid, or Hydromorphone 2 mg every 4 hours as needed,some days I have to some I don't I almost always have to take the first morning dose every day,it is as you might know a very strong med.Like you said it never really seems to settle in one place its very odd and so Random sometimes from one minute to the next literally ! I started the Dilaudid, a few weeks after surgery the pain was so intence ! However I was taking Darvicet like candy ( not good ) and over the counter meds to ease the pain nothing worked,since surgery seems like my body has gone through sometype of Shock.Every part of me don't want to work or move.It don't matter if i sleep 4 hours or 13 hours I still feel the same,I feel like I'm wasting away taking from my kids.I just can't wake up and feel good,for three years now.I'm not as depressed I'm just getting use to feeling this way. The Dilaudid, It helps some I can atleast get up and move.I also take Robaxin 3 x a day for my muscle spasms,I have them pretty bad,I had been on Lyrica for neuropathy witch has calmed down,I no longer take it but did 150 mg a day for about a year,after a hospital stay in november last year the hospital gave me 300 mg's a daay for 5 days,after I told them I could not take that much,the side effects had me thinking suicidal thoughts for 10 days or so,I had to pull my self through that one ! I have tried other things but because of the headaches from my PTC it's hard to find something that works and don't hypen the headaches... @ rayfoof I just can't beleive how much i have in common with you,your sx,and yes after being in the hospital through out this 3 year journey I felt all those things and was told i had Fibro ! Way to funny at yet not laughing,(: I can't say it enough U guys keep me SANE ! xxxx mommies4

mommies, i'm in a really bad flare up and i thought i had the flue from friday untill today (tues) i was in the ER for plurisy and they told me that i dont' have the flu and its just the sarcoid. OMG! i really thought i had the swine flu!

i should've known it wasn't the flu due to none of my family being sick!

LOL this is too funny. i really thought i was dying and its just the darn sarc

rayfoof, I've heard that it feels that way ! Sorry you had so much trouble ! Are you on a stroid or still,did they give you that to help calm the plurisy ? & Do you have a problem with swelling, I noticed it for the first time in the tops of my feet a few days ago,it happens at the end of the day? Curious !! I sure hope you get to feeling better ! mommies4

they put me on a steroid pack for the plurisey, its really helping.

my feet and hands swelling was one of my first symtoms. my ankles swell pretty bad too. It started on the tops of my feet like where the tendons run across the tops of the feet.

now that i have my canes it take some of the pressure off my feet so it dosn't hurt as bad LOL what a pain this disease is. I don't think any part of me is in tack anymore! :)

Hi rayfoof, good to hear they put you on a pack and its helping,Sinus flares in the past for me has always been pretty bad ,steriods always helped.. I'm 38 are you close to my age ? Curious at what the typical age for dx is ? What a pain this disease is, is right it sounds like ,,LOL.. I'll have to watch it it did just start , not something my body has done befor nd it is on the tops of my feet,i notice it at night around 8 pm or so I do still take the water pill Diamox for the PTC 1 every night. Oh and yes IN tack lost the grounds on that a while back lol...

i'm 28, i hear the normal age for this dx is anywhere from 20-40 so we are right in there.

i hope your feet feel better, if i ever figure out why the tops of my feet swell i'll let ya know lol

epsom salt baths take the swelling down for me.

hugs