Severe Muscle Pain/Neck/Shoulder/Arm

I have been having SEVERE pain in my neck, shoulder & right arm for almost a month now. It is so bad that I cannot use computer, write (I'm right-handed), or sleep on opposite side due to the severity of my pain. I am wondering if this could possibly be a symptom of sarcoidosis or if it is something else all together?? Any thoughts? I am pushing my VA doctor for an MRI - I can't go on much longer like this! Any comments will be appreciated.

Report post

27 replies. Join the discussion

all i can tell you is your not alone and so of the arthritis drugs helps dull but that is all

Report post

I am taking Gabapentin for fibrymyalgia but that isn't touching any of the pain!!! Not sure how to live with this level of pain. Guess I better find a massage therapist to live with! :)

Report post

I can't lift my left arm to a horizontal stance...hurts way too much. Also can't sleep on that side any longer. I also have severe muscle pain in the middle of my right bicep and will be addressing this, along with the constant foot and ankle pain when I see the neurologist in 3 weeks. My guess is that I will be put on gabapentin as well.

Just like the Jelly of the Month Club from "Christmas Vacation," sarc is the gift that keeps on giving! :)

Report post

I am experiencing some of the same. Neurosurgeon told me yesterday that the pain I have migh be sarc!! I left in denial of this. I can hardly bend my arms and my elbows are very painful. In fact, I hurt all over. Started having problems with my bladder last night. Anyone ever heard of sarc causing this problem??

Report post

Sarc can affect any or every part of the body.

I take gabapentin and vicodin.

Bev

Report post

I am sorry to hear of your pain.I have similar pain, all on my right side (neck, shoulder, shoulder blade, forearm, chest), never on my left. It lasts for a few months then goes away. I can't get any of my docs to say for sure it is sarc but it must be. The shoulder blade pain is excruciating. I hope yours goes away and never comes back.

Report post

I have the same problem. I have been on gabapentin for over 2 years.
I just went for what I thought was shots but found out what he did
was kill the nerve endings. I was having a lot of pain before I went
after its not as bad. They said it should be better tomorrow.

Report post

Hi, hope you feel better soon!

Have you tried over the counter Alleve?

I was having some pretty bad pain. Nothing otc would touch it.
I tried Alleve and actually got relief from some pretty bad pain. I was surprised.

Till you can see your Dr for something maybe stronger. Why not give it a try? :)

Report post

This sounds a bit like it could be bursitis of the shoulder. It is severely painful. A simple ultrasound should be able to exclude or diagnose this. I believe sarcoid is the cause of it. Voltaren helps if you don't have prednisone on hand. Do you have any parotid swelling, dry eye or facial numbness??

Pris

Report post

I had same thing, found out I had two ruptures disks in neck. Good luck Hope it is resolved soon.

Report post

I had severe leg pain so bad at night one night last week. It was about 2 o'clock in the morning.
I take pain pills sometimes. Also my fingers can freeze in place very painful rubbing them ususally takes care of that. My toes can do the same thing. My legs and feet cramp a lot at night too. Usually if I just move my feet on the floor the pain will go away. I guess pain is something that goes with sarcoidosis. I don't know. I know the pain was so severe i thought I was going to have to call an ambulance. That was the leg pain. Years ago I had severe pain in my upper arm stupid dr. said it was from holding cane in right hand.
Angela

Report post

Merry Christmas everyone and Happy hahah sarcoidoises. i also dealt with this type of pain also on the right side more than the left. Docs tried lots of medicine finally was put on Lyrica and it has calmed the terrible pain down a lot. I was already on gabepentin at the time to calm down tingling in my right hand and arm from what the orth said was c3-c4 deteriation but it didn't help. Hope you are able to find some help soon.

Report post

I originally had this in my rt shoulder so bad it made life miserable. Mayo injected my shoulder and after 2 days of it being worse after the injection it started getting better. That was 2 years ago and it is starting up again. I also had the same problem in my rt hip which I had injected about 6 mo ago with improvement. I really need to try an anti inflammatory diet to see if it would help.

Report post

Oh yes, the first symptom of one of my flares was when I was 19. I woke up one morning and couldn't pee. When x-rays were taken, my bladder had collapsed and was laying in the bottom of my pelvis. The only time my doctor had seen this was with another patient who ended up with M.S. Needless to say, I had to use catheters and a leg bag for over a year. I felt like a monster, it was aweful being that young and having that issue. I had a lot of other neurological symptoms, and I was given the diagnosis of M.S. I still have problems with my bladder and have to manually push on my abdomen to empty my bladder and occasionally use catheters to empty completely. When the doctors did a scope on me there were hundreds of lesions in my bladder. The urologist and his colleague had never seen that before. They took a biopsy, and it wasn't cancer, but they had no idea what it was. I now know it was and is sarcoidosis.

Report post

Merry Christmas. I am in the hospital right now with the symptoms you have. The docs. R telling me that yes it is from the sarcoidosis .that it can lay claim to about any part of the human being. They have decided that this discease just can take over at times,and we just got to take it a step at a time.which is scary but I have decided to stay calm. They have been working with me though and trying to help with dome I.v. pain medswere going to try pain pills tomorrow. Try to get to your doc.and be honest about how u hurt.we as patients get scared to let them know about r pain,cuz they. Might think were just drug seekers,o for one am tired of that I'm standing up and letting them knowpain is not something to joke with,they need to listen to us.but please don't hurt through Christmas go to your emergency room let them know,don't suffer. Know going to e.r. isn't fun but the pain u have is worse.please take care of yourself,don't sit in pain.and again too all of us sarkies with pain let's not be scared to tell the docs.,open our mouths and let them know we have true pain..no more intimidation.thanks for listening.merry Christmas,michelle

Report post

It cannot be denied that a theme is developing here. I also have much the same pain as you affecting my neck upper back and right hip and leg. Even if sarc is not the primary cause - it must be the secondary cause of such inflammation. I have no proof, just the evidence of experience. Hope you can have a happy Xmas - [ don't tell anyone but alcohol does provide at least a temporary release from such pain!!!! ] P.S. Don't quote me!

Report post

Thanks to all who are responding. It helps to know I'm not alone. I am so sick of being miserable!!! This pain gets so excruciating at times I wish I would just die!!! I have alot to live for though so this does pass; but it's such a horrible pain!!! I take pain meds (mild) but I'm going to call my doctor after Christmas & try to get in for the xray & MRI. I believe I may have a ruptured disc in my neck or possibly a pinched nerve in my neck that might be the culprit to my pain. My right arm spasms so bad the muscles get hard as rocks - it is weird & VERY painful when that happens. I will have to be medicated to enjoy any part of this holiday!!! God bless all of you who suffer along with me. Also those who can manage this disease w/out pain.

Report post

sarg,

the location of the pain you describe is very likely being caused by a pinched nerve (or two) in your neck.

The nerves to your arm, hand, shoulder travel up thru your neck, and when we get a pinched nerve in our neck, the pain will be felt in our arm, shoulder and hands. I neuro dr will be able to locate just whats going on in that area, you may also have a couple of bone spurs in your neck putting pressure on the nerve to your arm. I'm going to suggest 3 things ...

(1) get an appt for a neuro dr and a related mri of your neck area. The mri will show where the issue is
(2) for more helpful relief see if you can get to a physical therapyst, they have a device that stretches your neck by gentle pressure separating your head from your shoulders .. this relieves the pressure on the nerve. You can also purchase neck stretcher like the following ... http://www.arc4life.com/site/615058/product/NeckTraction990 ( I have a simular one) You must stretch out this area of your neck several times p/week for it to bring relief.
(3) try sitting on the floor and laying your head sideways on a couch or chair to see if it can take some of the pressure off and bring temp relief. Try relaxing to the right side, and left to see if any way works better.

I had this issue , the pain got progressively worse over about 2 months, at the end it was so bad I was rolling on the ground screaming in pain. It felt like my arm was being broken in several places, being dipped in liquid lava, and being cut with a knife all at the same time ... yet the cause for all the pain was based in my neck. The neck stretching actvity took away the pain after about 1 week, and avoided surgery to make more room for the pinched nerve.

God bless you and I hope this helps, and thanks for serving!!!

harmles2

Report post

Harmles2 - You are explaining my pain & issues to a tee!!!! I am going to try the sitting on the floor exercise w/my head on my couch as soon as I log off of here. I have a type of traction neck brace that I was given from physical therapy. I velcro it around my neck & it has a ball that I press that slowly inflates the neck brace so my neck gets stretched higher & higher. This takes off the pressure -I can usually tolerate it for 5-10 minutes. If it seems like it is too much I let some of the air out to lower the pressure. Thank you SO much for making these suggestions! Here's to all of us having a better year in 2012!!! God bless you!

Report post

sarg,

the pain was so bad with me, for several nights the only way I could get a couple hours sleep was on the floor slumped over the couch. It seems (for my neck issues) that the tilting of the head to one side or another with no weight on it resting it on the couch, allowed the pain to back off enough to bring some comfort and thus some sleep. This happened to me from hanging some sheet rock in our home, I suspect I used my head to support some of the ceiling sht rock and compressed the vertibra in my neck. Perhaps you have been doing something that put pressure on your neck?

Its really wierd that the pain is felt in our arms, hands and shoulders, but comes from the neck, I would rub my arm trying to make it feel better, with no results ..... I don't take pain pills, but the pain was so high, I actually tried a couple, they did not help at all. .... only getting to the physical therapyst and the neck stretcher did I get relief. The PT used a neck stretcher with a hydralic pump, she would put me in this device, and pump it up gradually increasing the pressure over a few weeks. She would ussully put a hot towel around my neck first to get my neck muscles to loosen up. The neuro doc offered to open up my neck and carve away the bone to make more room for the nerve, but I choose to try the PT 1st .... I knew a lady who had never ending pain and multiple neck surgeries after one neck operation. I consider surgery the very last option.

So is this sarc related? I say yes, while I never had a biopsy of any muscle tissue, (I did have a sarc confirmed biopsy of my lung tissue) me and my dr were both convinced that my joint and muscle pain were related to sarc. I also have fibro (many sarcee's do) but that pain is "normal", stuff I can live with, annoying, but not debilitating. I lay on my bed nearly every morning, stretching out my back and neck. Cold weather seems to make it flare ... muscles are tighter.

My own opinion, ...... I think our muscles harden with sarc, they and our tendons seem to loose their ability to stretch. My back, neck, legs, arms always feel tight. That arm pain was the most painful experience of my 5 yr battle with sarc, ...... hell its the most pain I've ever experienced, and I've had some nasty injuries in my time.

And may God Bless you, your faith and service truly inspire me!

PS My wife and I recently published a book on marriage, ( I see you are engaged) if you would like a free copy, (see here ... www.u-build.com also on amazon.com) just private message me with your mailing addy and we would love to send you one as a very small tribute to your service to our country. I touch on being married and living with sarc in the book. I've also written a post about how to live with sarc you can find here .... http://www.inspire.com/groups/stop-sarcoidosis/discussion/how-to-live-with- sarcoidosis-reprint-and-updated/

Harmles2

Report post

This journal entry is closed to replies. We close all journal entries after 90 days.

If there's something you'd like to say, here are some things you can do:

Things you can do