Dear angels,
I'm lying here on the bed in my neck traction device, which does help a little, but hurts my head when i use it.
Friday I had the first full blown pinched nerve in my neck (which is in terrible shape from osteo arthritis).
My left shoulder hurt so badly and I couldn't and still can't use my left arm. It hurt down to my elbow and up the side of my neck, and into my side. And the right shoulder hurts too, but i barely notice it.
I cannot take any RX pain meds. Now it is Sunday, and the pain eased a bit over night because I spent most of Saturday lying in bed with the traction thingy.
it hurts where is presses on my head behind my ears. And I have a terrible headache too,
I've had neck problems for 25 years, but this is the first disabling pain like this,
I'll call the neurologist tomorrow, the one I told not to bother with an MRI because I don't want surgery
HA! I'm ready to do anything right now.
I'll call my GP for an RX for Flexeril, something to relax me through this pain.
Ack, I'm just whining. Sorry..
I want this gone now.
sigh
hugs
well no real hugs of course
Elaine
Elaine, A week of chiropractic adjustments would help from the pain you describe. 1 or 2 sessions of cranial-sacral work. The exercises that I use may do you more harm than good. Meditation may be a good option while you are in traction.
Elaine,
So sorry to hear you are suffering so much. When I read posts like yours, I always realize how much worse it could be.
Keep us posted and I hope there are some answers for you.
Anna
Sorry to ear you're in pain. I remember you can't take narcotics. Have you tried lidoderm patches? It might be worth a try.
UGH.. I feel your pain! I have a bulging disc in my neck and lower back. I have a traction device too.. hate using it for similar reasons as you posted. I can't take pain pills either.
let us know how you are doing tomorrow !!
hugs!
I'm so sorry that you are experiencing such pain. I have been where you are now. I, too, have had excruciating neck pain, pain down into my arm, too. I thought my life was over, that I was going to be stuck in bed. An MRI showed severe disc disease. The neurologist offered pain meds but I requested physical therapy. After a few months I was so much better. It has been over a year since I last had serious neck pain, only minor episodes now, never enough to even take a Tylenol over. I try to do my exercises at home. I have a traction unit and IFC unit for pain that just sit idle in a drawer! I hope this encourages you that you can get better! Gentle pats!
I'm sorry you are in such pain Elaine. I have begun the osteoarthritis ride since last summer. I knew my spine was in bad shape for years but now all things seem to be osteoarthritis! It makes me wonder if this is the result of the Sjogrens (it seems like everyone with Sjogrens has osteo OR RA) or if we would have suffered from osteo regardless of the Sjogrens? About 10 years ago I suffered from right ocipital neuralgia.....it was severe nerve pain from the right back of my neck up through my skull.......the right side of my tongue almost felt numb. It took forever to get diagnosed and with the right treatment, the chiropractor made it worse......I couldn't sleep and the pain never let up. Your severe pain reminds me of that episode and I'm truly sorry......don't wish neck and head nerve pain on anyone!!! Hope you feel better soon. I'm getting an MRI of my spine on Tuesday to see how it's progressed in 5 years (OA). Hope you find relief real soon. hugs for you and prayers for less pain. Jill
I'm so sorry that you are in such pain!
I have degenerative disc disease in my cervical spine as well as Sjogren's, so I literally feel your pain. I had a cervical epidural injection a month ago, and for the first time in years I'm not on medication.
I hope something can be done to make you feel better!
Dear Elaine, I am so sorry you are goinng through this. That sounds extremely painful. I hope you can get some releif soon.
Luna
Elaine, this is a WAG -- a wild-bum guess -- one that doctors would deplore. I know you are pretty familiar with the pain your body can put you through, and cannot take narcotics or a pain killer like Tramadol.
It would be tough to convince a doctor, schooled in "first do no harm," to try giving you a corticosteroid like Prednisone for the pain -- in short spurts, low doses. I'm thinking of Ark Mom's new post on her response to Prednisone, as working for her, as it has for me, as an amazing pain killer for musculoskeletal pain.
The risk with Prednisone is osteoporosis, which would not help your neck and spine get stronger. On the other hand, Prednisone might give you the freedom from pain, and the energy, to do some intensive physical therapy.
I didn't wait for a doctor to put me in PT, but started in the middle of January, with my back and left hip. I am now walking with some spring in my hip, and going back to PT for my right shoulder. After that it's my neck, that's just acting up. I am on 6 mg of Prednisone a day, and had to fight with my rheumy to get it.
OK, it's a one mg win in my favor, but a win is a win! ;-D
Hang in there, Elaine. Write anything you can to let us know how it goes.
{{HUGS}}
Soycoffee
Hi Elaine
I am so very sorry that you are having such a bad time of it at the moment there is nothing worse than being confined to your bed in severe pain my thoughts are with you ((((Hugs))))
Cheryl
I feel so bad for you. I too have a messed up spine, both lumbar and cervical. Stenosis, bone spurs, arthritis, etc in my neck. A couple of weeks ago my pain management doc gave me an epidural under Floroscopy. It has helped tremendously. I would give it a try. Gentle hugs.
Hi Elaine,
I hope that this morning you are finally feeling some relief. Please do let us know how things are going.
I can relate to the neck pain myself, with both degenerative disk disease and RA, I have been pretty debilitated for the last ten years.
A few months ago I found a physio therapist who specializes in inflammatory arthritis. It hasn't been easy, but I've persevered with the twice daily stretching and 4 times weekly strengthening exercises. And today I feel less pain and stiffness than I have in a decade. And I'm able to use less pain meds as a result. :D
As Joe suggested, I have monthly cranial sacral therapy to help manage the neck pain and headaches as well.
Take care of yourself. ;)
I so sorry you are in such pain. I hope you feel better real soon. I enjoy reading your post so very much.
Bless you all angels!
I am hoping for maybe an epidural.
Soycoffee: I KNOW a course of prednisone would help, one of those pacs that starts big and reduces every day.
I have done neck exercises, earlier on. I'll see what the doctor says for this go round.
It's sad and some how comforting to know that others suffer this same way, isn't that weird?
I think the FIRST time for everything is the scariest, and if it abates, I won't be so worried next time, maybe.
The neurologist's nurse is figuring out who I can see when. The neurologist himself isn't available until May, of course.
May I should call my Rheumatologist, too? Whaddya think? I mean it is arthritis?
I just wish I could go back to my exercising and stuff.
Hugs
Elaine
I agree, Elaine. I think your Rheumatologist would be the best "ologist" to call in this case.
I think my epidural was a miracle. Just don't do anything after until you get the okay from the doctor. I learned that one the hard way, and had to have mine re-done!
Carolina,
You might benefit from the lidoderm patches due to your sensitivities. It's "topical" and less then 4% is absorbed into the body so risk of side-effects are very small. Actually more the 95% of the medicine never leaves the patch itself. Arthritis type pain is exactly what it's best for.
I'm getting ready to try these for nerve pain in my feet...which may not be as successful as your arthritis type pain. But I'm hoping for at least some relief.
I'm hoping you are feeling better today.
Good luck, hoping the pain gets better for you. Neck and head pain just seems worse for me and makes me very nauseous. I had the whiplash pain or occipital pain again recently and hated it, went into the ER for anti nausea meds, already had pain meds. The Lidoderm patches help on my forehead. Not so much on my back, and they stay stuck to my neck they keep coming off. If I lay in bed against a pillow it will kind of stay on. Today I bought a new over the counter patch that's carpasin (sp)? That hot pepper stuff. I'll try it out. There's a muscle relaxer that I got from teh ER that seemed to help also better than my pain meds. Ice of course helps. Sleep is great, but of course when I wake up the neck pain would come back. I'm going now to the chirporactor for my back and getting neck adjustments 4x/week. And going once a week to the aupuncturist and then doing a sacral release therapy, trying to loosen up those tight muscles I have. Let us know how it goes!
well, the neurologist's nurse lost my info on her computer, and called for it again in late afternoon, Monday.
i did the neck traction all day Monday on and off and slept better last night, pretty much pain free today! o f course I have my 'usual' pain;, but have to remind myself that it's not what I had earlier.
i actually went out to lunch with friends today and now I'm in traction again, 'just in case'.
No word yet from the neuro nurse of course. Sigh.
by the way I saw the special Duke urology team PA about my IC. They don't handle IC! He referred me to a urologist 50 miles away who isn't in my health plan. NONE of the Duke urologists will see me!
I'm still thinking about that one. Deciding whether it is worth paying the 'full ride' to see him or not.
Thanks for all your tender loving care and advice and concern! I'm sooooooo tired.
Just keeping on keeping on.
Hugs
Elaine
You would have to pay me a lot to go to the Penn urologists. If you are looking, see if there are any urogyncologists around, also called "pelvic floor specialists." There are now three women in a shared pelvic floor practice at Hospital of the University of Pennsylvania. There may be one or two at Duke or Johns Hopkins. -- Or I could give you the names on my brochure and you could call this practice to get a recommendation in the Duke area /that your insurance could cover.
Contact number for HUP Bladder and Pelvic Floor practice: 215-573-4040 -- three women, urogynecology.
Glad, so glad, you are feeling considerably better today.
Keep it up!
Soycoffee
Hi Elaine
Glad to hear that you have improved.
I did have 3 needles x 2 lots of epidurals in my lower back before my back opp about 3 years ago the first lot didn't help but the second lot settled it down and was able to keep me fairly good while waiting for my opp.
Keep resting as you know pain wears you out.
Take care
Cheryl
ive had should and back pain on my left side since my early 20s ..i finally figured out its from sjogrens../arthritis..
i sometimes get relief from the chiro and/or ibuprophen but it never fully leaves..
feel better
Elaine, I'm so glad you are feeling better. So sorry you were in so much pain that is not fun! I kind of vegged out over my bladder pain the past few days and didn't pay as much attention to the boards or I would have sent you good wishes earlier.
Even though the pain has eased up, I'd still try to get into the neurologist or the rheumy as soon as possible. Can you call the doc that was going to order the MRI you just call it in so you can go get that ASAP? I've had several MRIs, but not surgery. The MRIs have helped the docs determine exactly which level they want for the epidural.
I actually use a physicist or something like that. He treats backs, etc. I am so grateful for him. He's about the only doc I can get in within the same week. He orders the epidural under the fluoroscopy and they do it at a clinic.
Good luck with your IC and finding someone who will treat it.
I'm sending you prayers and wishes for painless days and nights!
Tami
Sounds like you have already gotten a ton of good advice.
Just wanted to jump in and say my thoughts ar with you for a speedy recovery! :)
Thinking of you and holding you in the light, my friend.
I feel for you, my journey with sjogrens started with neck and shoulder pain which I had for about 18 months, its so hard to when you are dealing with pain, mine is much easier now but it flares every now and again and start using heat and pain relief again. Hope you get some relief soon
Leanne
You will be in my thoughts this week.
I'm sorry you are having such a miserable time.
Your post are always so helpful and uplifting.
I hope you get some relief soon.
Glad you got to go out to lunch.
Quote from: Doxie on February 28, 2012, 09:04:17 PM
I actually use a physicist or something like that. He treats backs, etc. I am so grateful for him. He's about the only doc I can get in within the same week. He orders the epidural under the fluoroscopy and they do it at a clinic.
Tami, I think you mean "physiatrist" rather than physicist -- the words are similar, and they start the same. A dictionary might not even *have* the word "physiatrist." A
physiatrist is a doctor of Rehabilitation Medicine. Twenty years ago when I was rehabbing after being hit by a car, the word "physiatrist" was used more often, so would be more familiar -- so I know it. The trick is to remember the phrase "physical medicine and rehabilitation." I don't know if that's any easier.
You are right, Tami, and right on about what they can do, and in my experience, also about their availability. This is from aapmr.org, the professional organization of doctors who specialize in rehabilitation medicine.
QuotePhysiatrists, or rehabilitation physicians, are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move
Rehabilitation physicians are medical doctors who have completed training in the medical specialty of physical medicine and rehabilitation (PM&R). Specifically, rehabilitation physicians:
Diagnose and treat pain
Restore maximum function lost through injury, illness or disabling conditions
Treat the whole person, not just the problem area
Lead a team of medical professionals
Provide non-surgical treatments
Explain your medical problems and treatment/prevention plan
The job of a rehabilitation physician is to treat any disability resulting from disease or injury, from sore shoulders to spinal cord injuries. The focus is on the development of a comprehensive program for putting the pieces of a person's life back together after injury or disease – without surgery.
Rehabilitation physicians take the time needed to accurately pinpoint the source of an ailment. They then design a treatment plan that can be carried out by the patients themselves or with the help of the rehabilitation physician's medical team. This medical team might include other physicians and health professionals, such as neurologists, orthopedic surgeons, and physical therapists. By providing an appropriate treatment plan, rehabilitation physicians help patients stay as active as possible at any age. Their broad medical expertise allows them to treat disabling conditions throughout a person's lifetime.
The website, aapmr.org, also has a search tool to find a physiatrist (pronounced phi ZI a trist), that is pretty neat. There are nine in Raleigh, and eight in Durham -- for Elaine.
There are subspecialties, so if you want rehabilitation for RA, you don't want a physiatrist who
only treats sports injuries.
Elaine, I hope that you continue to improve and hurt less. I admire your self-reliance in even having traction ready to use, and then using it. And posting through the pain.
Wishing you a full recovery,
Soycoffee
OK, saw the neuro today. That was FAST.
He doesn't think this is neck related pain, and I have to agree.
He had me tested for a heart attack. Which seems weird since the pain abated at night when I was lying down.
At this point I give up trying to interpret stuff.
The test was a blood test for a marker that stays in your blood after a heart attack.
I'm quite sure it will be negative. I should hear in a day or two either way.
I do wonder about the Sjogren's/shoulder thing, Valene.
I have severe osteoarthritis, too. So I suppose that it could be arthritis pain triggering a sort of muscle spasm?
Who knows.
He will follow up once the heart thing is ruled out.
He said if the pain returns I must go immediately to the ER to check out my heart.
OK, I'm game.
He's very very thorough and did a good neurological exam to see if there was any neurological damage in my shoulders, hands, neck, etc.
And listened very very carefully to my heart.
After the heart thing is ruled out he'll look at the muscle relaxant idea and injections, after doing the MRI.
I'm just hanging in here, waiting to see what happens next.
Love all your comments and ideas.
Hugs
Elaine
Oh my! Did you get an EKG done?
Hope the heart enzyme test comes back negative!! I would never have thought of that possibility!! Glad you are feeling better!!
Sorry to read you are in such distress. I was wondering about cortisone injections, like they do for back , knee and hip pain. The idea of having a needle stuck in your neck might be creepy, but better than this misery.
Thoughts and prayers with you. Let us know what happens!
Hi Soycoffee,
Thanks for clarifying it. It's weird that I can never remember the name of the type of doctor he is. When I think about it, I do know what a physicist is, so I should have known that wasn't the right word. :D
Also thanks for the description. When I first went to him, referred by someone from work, I just thought of him as a back doc. I originally thought he was an ortho doc. But he has been so very helpful.
Elaine, I hope all your tests are good and that your heart is ok! Keep us posted!
NO HEART PROBLEM!
Tests all came back normal.
YAY.
Well I was pretty sure.
NOW, BTW, I think the 'real pain' is in my shoulder. That's where it started slowly, then got worse and worse and finally I think I had like muscle spasms in my neck, jaw down my arm and even in my side.
Sooo..... I wonder what that is all about?
I searched neck pain and came up with lots of postings here. So it sounds like many of you have neck and shoulder pain, more like what I just went through that actual cervical spine problems.
I mean my cervical spine is a mess, but this wasn't that and it wasn't my heart
So.
Onwards and upwards. And it isn't HERE TODAY.
YAY
I also have my 70th birthday today.
Every day is a gift.
And this one is double since it's my birthday too.
Hugs angels
Elaine
Well Happy Birthday, Elaine! ;D ;D And your news is the best gift ever! ;)
Hurray! I'm so glad your heart is ok. However, I do know that you're back to your shoulder/neck/arm quandary. I hope you find some answers soon.
Happy, Happy Birthday Elaine! I hope you have a great day!
HAPPY BIRTHDAY ELAINE!
I am glad your tests came back ok. I have been having neck pain also. My mom has it so bad, but after x-rays and other tests she was told she has bone spurs in her neck. She was told she could have surgery, but she doesn't want to at this time. She wears a pace maker, and has had many other issues, so surgery is high risks for her these days. She has had some physical therapy which helped her when she would do it.
Hey, have a fun day on your day.
We all luv ya.
susanep :)