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Sarcoidosis-pain

holley2583
0 Recommendations

Just was diagnosed, actually today, but gave even more blood to check again, and again. its in all my joints, and some of my muscles feel bruised when i touch them. First my ankles were swollen, then my wrists and hands, and my chest was sore. I have recently gained like 25 pounds too, but i dont know if that has anything to do with it since i have been active until just a few months ago.
The more research i do the more scared i become. my lungs are clear, and i have no lumps. Comparatively im lucky i guess.
what does everyone take for the pain and stiffness? All they're giving me is an NSAID and tylenol and it's not doing a thing. Please let me know what to expect. and dont sugar coat, i have to deal. I put all who reads this in light and love.

Explore topics in this discussion:

Exercise Iritis Surgery Plaquenil Back pain Relafen Fibromyalgia Ambien Stress Advil Celebrex Indomethacin Tylenol Mobic Imuran Aleve Motrin Occupational therapy Norco Rheumatoid arthritis Prednisone Sarcoidosis Flexeril Arthritis GERD Coumadin Diclofenac Meloxicam Spinal fusion Pain Floaters Depression

27 replies

LittleEcho

Holley,
I have incredible pain and stiffness as well. I feel like some punched me in the affected muscles. The best thing I have found for the pain in the joints is indomethacin. You can't take it on a regular basis because it's not good for you. I just take it when I have to do something. I also take norco when I can't stand it any longer.
Like you my lungs are clear.

Mitch

For the last 6 yrs I get left shoulder pain from about June till December. I've had times my wife has had to help me put my jacket on.

Mitch

ellj

Hi,
Where is your sarc?

Pain. It's our body's way of saying something is wrong.
I have multi organ sarc. I have lots of pain depending on what is deciding to act up that day.
If it's joint related, the first thing I do is rest. If that doesn't work, I try soaking or having a massage, or moving.But, some days I must go the NSAID route to get the inflammation down.
And some days, the Rx pain med route for organ pain or the all over "I can't move pain".
If current meds are not working to reduce your pain, please speak to this with your doctor. A different Rx or pain management technique might be considered.
Take care!

holley2583

the problem is i cannot take anything with narcotics, if thats what you were implying. ive been researching all night for a way around my dilemma. Thank you for your help...do the nsaid's help? are those the ones that actually lower your immune system. Oh, and are your eyes bothering you, i have noticed spots in my vision that started about eight mos. ago or so.

ellj

Yes, my scripted meds are narcotic, which is why I self limit them so much.
NSAIDS do help reduce inflammation. I have to take celebrex because I have another condition too and I do notice I feel less joint pain after that dose- but there's lots of non Rx NSAIDs too. I don't know about immune reducing NSAIDS, hadn't heard of that side effect. Maybe you are thinking of prednisone?
Have your vision checked by an opthamologist. Sarc effects the eyes in some people.

Angelfox

I take Mobic (meloxacam) for joint pain.

Great-gram

Hi, Holly, What kind of doctor do you see, and how did they diagnose you? For joint problems, most usually see a rheumatologist, and sometimes they are the ones that coordinate treatment. Most of us deal with fragmented treatment with each doctor doing their own thing. I can't use NSAIDs of any kind, as I am on coumadin (a blood thinner). Rest is helpful, along with reducing stress, if that is possible. I am supposed to be scheduling an appointment with a rheumatologist. Hopefully he or she is familiar with sarcoid. Iam being referred to rule out possible fibro and polymyalgia. Who knows? Not every symptom of health issue is related to sarcoid, but could be. I had early cataracts, and the opthomologist couldn't figure out why. Now I have dry eyes, which are for me very easy to treat. No definitive diagnosis, but she suspects it is from the sarcoid. Tylenol is the only pain medication I use right now, and I try to avoid that. There are some alternative therapies that work; also your doctor could refer you to someone who specializes in pain management. They are really good at coming up with things other than medication to reduce pain. It's worth a try. They will also prescribe medication when indicated. God bless! Great-Gram

holley2583

well, i went to my ,now fired, nurse practitioner with my left ankle super swollen and my left one was not quite as bad. my wrists and hands swollen and painful. She referred me to an Rheumatoid Arthritis specialist, and i got blood work done that day to check for RA and Lyme. I luckily got in to see the RA Dr. Heller because someone canceled while i was making the apt. otherwise I'd still be in the dark.
But between those visits i saw my Psychiatrist, she put me on NSAIDS for swelling and rapidly increasing pain in all joints, my chest too and it feels like my muscles are all bruised everywhere to the touch. I noticed my Lymph nodes were swollen pretty much every where i know of.
So saw Dr. Heller, said i have carpel tunnel in right hand which makes since because i was an orthodontist assistant for eight years. Lyme was neg, but RA slightly elevated as well as lymphocytes.
He took more blood,and i finally heard from him two days ago. i think my blood was on a pony somewhere, haha. Lyme neg again, RA neg but ACE was off. Took more blood for yet another test. So at the moment nobody's certain and from what i've researched that's not very uncommon.
It appears that it is only on my joints/muscles for now, my lungs are clear. i have terrible GERD for sometime, but has gotten way worse the last few months, and suddenly i have "floaters", i had never heard of such a thing. "Family Guy" has a funny bit on floaters...so today im just chillin makin some goofy photo art on my computer, never done it, try it. Picasso is free under google. Off topic i know.
Im very concerned about the pain management, it's all new to me and feeling pain with every word i type just stinks. i am preparing myself for whatever is placed in front of me. Geeez, i really do need to find an appropriate counselor or i could go on for days with just my last five weeks of life. Thanks for the inquiries and the advice. i think i answered all the questions, but if you think of anything else. write. bless and light

Krissy

Hi Holley,
I have similar symptoms to you. It is hard to know which way you will go, better or worse. You may never develop lung symptoms. No one knows for sure.
Holley, it is hard to believe this, because you are in pain but activity really helps. The more I rest, the worse I become. I have always been extremely active but before I was diagnosed I became frightened because I didn't know what was going on. All I knew is that when I backed off from exercising, the pain became worse.
Read Priscurl's posts on vitamin D and ask your specialist for the appropriate tests. Follow an anti-inflammatory diet because this is an inflammatory illness.
I have probably had sarc for a very long time before I was diagnosed. I was only diagnosed 3 years ago. When I remember back to 3 years ago and how much pain I was in then, I realise that I am not that badly off now.
You can read about all of us and take on board our experiences, but when it comes down to it, no two sarcoidosis sufferers ever have identical symptoms. I hope that you have a good support system with your family. It can be very frightening when you are experiencing this kind of pain daily.
I am not on any medication, although I did take prednisone for a year after I was diagnosed. It does give you incredible relief from the pain & inflammation but comes with health consequences of its own.
Take care,
Krissy.

kkupsky

I have to agree with Krissy, Holley. I am in constant pain - everywhere. If someone touches me, my body screams in pain! My joints hurt, my skin hurts, my muscles hurt - heck there are days when I think my hair hurts too. I have sarc in my lungs and I presume my brain although I haven't been officially tested - symptoms are present. At any rate, after reading this web site for months I have taken myself off of all drugs except plaquenil and an ocassional advil to take the edge off. My new method of treating the pain is activity. I started running and the days I can't run I walk. I am kicking in the endorphines to help with pain and it seems to be working. I don't go far yet, but one day I will. I also do a lot of stretching and lift dumbells. I laugh in the face of sarc - and cry when I am alone. I refuse to let it bring me down without a fight!! Get up and move. If you can't run, then walk. If you can't walk, then stretch. It will help.

pamk

Cymbalta can help with the pain and depression for some people. I had incredible relief but then started getting side effects and had to stop. Many people say the side effects go away in 10 days to 2 weeks. Talk to your dr about this. I am allergic to motrin and narcotics. Can't take prednisone. I a trying plant enzymes now but not much difference. I am going to look into massage and water exercise next. I gotta just keep trying til I find some relief. We are all in this together. If I didn't have ambien at night I would not get any sleep either. Good luck.

gonenatural

i have overall joint pain. i do know i have arthritisis in several joints for many, many yrs and drs do not know why and will not treat it or use preventive meds. Boston drs do not believe in joint sarc and don't look for bone sarc unless it is big enough for them to see with the naked eye.
i have never found a med that truely helps with the pain. if it helps it is because it knocked me out for a bit. i have used otc pills and oitments, pain meds in different doses and fields and muscle relaxers with very little or no relief.
I try stretching and using my Wii helps some, doesn't kill me like some meds might. Sometimes in more pain but i got the exercise my mind and body needs.
hope you have better luck
gn

carosu

Fortunately 2 Aleve in the morning keeps the pain away for me. Don't ignore the eye issues.... I lost 50% of my sight in the left eye. Started with a little double vision...and some blurriness...then some floaters...

Find an opthamologist that specializes in diseases of the eye (retinal, uveitis, etc) and do some research yourself.

Good luck. carosu

holley2583

thanks for all the info, it helps to have you guys since i dont have much support. i actually feel much better today, and i am going to live for today too, i already went for a walk, (in the rain) because i dont want to miss the chance. i started taking an NSAID two days ago, they said it would take a week, but maybe it's different for everyone. I finally got a few hours of sleep, but not much. ive already noticed that the difference in pain can change in an instant. This is all so much. ive been unemployed since Oct. and i was finally getting the interviews i was searching for. I have a degree in Occupational Therapy Assisting but nolonger certified or liscenced. But it is coming in handy as far a ROM exercises and compensation skills. Does anyone here see an OT? But i recently took my first class in Reiki and practice on myself almost everyday, and that seems to help a bit for a little while. since everyone is different, does that mean i may not get this all over? i guess anything is possible. Question...is it often that people can get ssi or disability with this? of course that was the first thing that my dad asked. And, will regular reading glasses help with my vision at all till i can get in to see an Op? thanks you again, bless and light

carosu

Did I really post that 2 Aleves have been enough to control the sarcoid pain?

This disease is nasty, sneaky, sadistic, cruel and unusual etc. etc. This afternoon I tried to do some work and I had back and chest pain.

So... 2 Aleves work on the pain AS LONG AS I STAY IN MY ZERO GRAVITY RECLINER!

NEW PLAN: Aleve in the morning and work in 15-20 minute spurts with as much rest as needed in between.

When will I learn that the _____ sarc monster doesn't like us to say "I don't have that" because h

holley2583

WHAT IS GOING ON AROUND HERE(BOSTON)I DO HAVE A REPUTABLE RA DOC. DR. HELLER IN HAVERILL, MA. TRY HIM IF YOU STILL ARE NOT SATISFIED WITH YOURS.

gonenatural

Thank you, I saved the info. I have been to a 7 drs at Brigham and Woman's, 1 did 2 serious hand surgery's and I am worse now and he and the knee surgeon I am working with deny joint sarc. Only 1 mentioned sarc on paperwork when I was dx'd with severe chronic EN.
And a dr at Boston Medical won't discuss sarc even though he states he is a sarc specialists.
I saw a rhumy at ? because of my severe arthritis but says she really can't see me because I don't have inflammation. I know I usually don't but I believe I do on occ just when I do I am not at the drs or they are not looking for it when I am.
I am just plain confused.
I have started going to UMass Memorial and they have been better than fantastic.
Thanks for the heads up
GN

paminbama

I have stage 3 lung sarc with multi system involvement per my PET scan and CT scans. I am on Imuran 100mg a day and prednisone 10mg a day for 2 years and have gained 40lbs. I also have fibromyalgia and my pulmonologists put me on Cymbalta 60mg 2 months ago. I tried NSAIDS Diclofenac 75mg twice a day and Relafen 500mg twice a day, but had to come off them because of increased BUN and CREATNINE levels damage to my kidneys. I now have excruciating back pain with activity, all the way across my lower back stabbing pain and achy pain in my flanks and under my right rib. I have sarc on my spleen and liver and other abdominal areas. This is very discouraging, because I am still trying to work my 40 hours a week as a LPN in a modified desk job thanks to an understanding employer after a letter from my pulmonologists to lighten my work load, stress, and no overtime hours. I have a massaging back cushing in my desk chair that helps. But sometimes, more lately, I feel like my back is breaking in two! I take Flexeril muscle relaxers at bedtime, and Ambien to help sleep. It looks like I'm going to have to ask my doc for some low dose narcs to take the edge off the pain, so I can fuction, like walk to my car after I get off work,etc. I'm not going to sugar coat it. Having sarc has changed my life forever and I miss my old self. Just take it one day at a time, and try to enjoy the time we have. I was diagnosed in 2005 after a lung biopsy and lymph node biopsy. They thought I had Lymphoma, so you see, it could always be worse!!

denyse

This all sounds so familiar. My RA is slightly elevated. Lungs clear- granulomas almost gone. Joint pain and fatigue comes and goes. Definitely is better when I eat healthier. I started 2 new supplements which help. I didnt notice how much it was working until I forgot to take it for a couple of days. Highly recommend these:
Glutagenics and UltraClear Plus, both by Metagenics.

Virginia22

Hi Holley,

I take either ibuprophen (Advil) or naproxy sodium (Aleve). I try to alternalte them so each works better. Just don't take on an empty stomach. If I'm in a great deal of pain a muscle relaxant helps quite a bit. I will take it after I get in for the day. I also get help from chiropractor/accupunturist. This will give me several good days in a row. Rest is very important.

I hope this helps. Everyone on this site is very generous with their time and advice. My best to you.

Virginia

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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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