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Need help figuring out what is going on with me! Severe pain in neck and shoulder

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Fibromyalgia
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Posted 5/15/2012 11:56 PM (GMT 0)
Hi all! I am new here. I have been researching my undiagnosed condition for years, and I have finally decided to reach out to my peers which lead me here. A short summary of my issue is that about 5 years ago I started having a strange sensation in my shoulder. It was very restless like the feeling of having restless legs, but in my shoulder. I had to continually move my arm to get any relief. After a week of very little sleep I went to my local urgent care. He said it was inflammed nerves and referred me to my family doctor. From there she sent me to physical therapy and the chiropractor. Neither helped, and I ended up at a phenomenal pain care. My pain care doctor started with trigger point injections and the knots would just tighten right back up and be just as painful when the numbing agent wore off. From there he tried more trigger points, facet injections, epidurals in my neck and referred me to numerous orthopedic drs and surgeons and so on. My pain has progressed to debilitating levels with muscles in my neck and shoulder as hard as rocks. It has also moved into my other shoulder. My pain care nurse even used me to show a new nurse what the worst case of muscle tightness felt like. I've tried every nerve drug on the market, I'm on cymbalta now which has helped with my chronic fatigue but not the muscles. I've had Botox injections and the muscles tightened right back up in 2 days. My MRI and X-rays show some arthritis in the neck, but not so severe that it should be causing this. The reason I posted on the fibro page is because I'm told constantly that this is what I have. I'm not so concerned with that as I am with the muscular issues. This has been going on for so many years with not so much as a diagnoses. I have all the other symptoms for lupus and/or fibro and the fatigue gets to me quite a bit, but like I said the muscles are my biggest concern. I take a ridiculous amount of narcotic pain relievers, time released and immediate, muscle relaxers and the cymbalta, however nothing helps. I'm stuck on the couch 80% of my time. Which is absolutely killing me. I used to be an extremely active 26 year old woman. I had to quit my job as a hair stylist which is my passion, but there is no way I can do it. I try to stay positive through all of the "I don't knows" and "you are just going to have neck pain for ur life." However, it's really taking its toll on me. Im not sure if it will help, but I feel like just having a diagnoses would make me feel like I'm justified in being so pushy with all these doctors. I recently saw a rheumatologist, which was a traumatic experience. She clearly did not care why I was there, and was in no way willing to help. I'm waiting on more blood test, and I will find another one. I realize they are all not like that, and she was just another random stroke of bad luck. I apologize for not being quite as "short" as I promised, but I'm hoping that someone will read this and have some sort of answer or direction to put me in. I appreciate any advice and am happy to answer any other questions I haven't covered. Thanks again!
Posted 5/15/2012 11:57 PM (GMT 0)
I forgot to say that I've had emgs and X-rays and mris and every other test you can possibly think of!
Posted 5/16/2012 12:38 AM (GMT 0)
Hi Crewsn2,

Welcome to the fibromyalgia forum. Who is it exactly that keeps telling you that you have fibromyalgia? The doctors or just people? I was just curious.

I am sorry that you are in so much pain, but I wonder if you took something for the fatigue if you wouldn't feel better. One thing I do know is that gentle stretching helps with your muscles. I think magnesium helps them to feel better. You might want to try malic acid and magnesium. You can read about that in a thread called "fibro 101". It is the second thread on the forum. It also has a list of symptoms that I think would help you.

I make sure to move around daily. I always go for a walk. It relaxes my muscles and helps me to feel better. Don't give into that fatigue. Try walking and drink lots of water. It hydrates your muscles. I also have a lot of discomfort in my neck and shoulders and I find that a "bed buddy" helps. It is a tube filled with rice or beans or even barley. You heat it in the microwave and then wrap in a towel and place around your neck. The moist heat really helps. I found mine at Walmart in the pharmacy area. I think that would help you tremondously.

I hope that you feel better soon. Keep posting. Know that all your testing is to rule other things out. That is the only way that they can get a fibromyalgia diagnosis.

Hugs, Karen
Posted 5/16/2012 1:29 AM (GMT 0)
Karen thank you for your reply and suggestions. How nice to have others who understand what it's like to hurt so much and care! Unfortunately, I've tried them all! Nothing will relax these muscles! I've done all the heat and ice and creams and rubs and massage and every supplement known to man!
My doctors are telling me that it sounds like fibro and most likely is, but no definitive answers. Ive had doctors tell me that since i was about 11 and sick constantly, but that was before so much was known about it and other doctors told my mom it was just because they didnt really know what was wrong so it was never pursued. Even with a firm diagnoses I STILL want to know what is going on with my muscles. It's just changed my life so dramatically and at such a young age I feel like I have to know! Thanks again!
Posted 5/16/2012 2:04 AM (GMT 0)
What I read once said that they become rigor. Like muscles get when a person dies. The muscles aren't dead or anything but I think they become rigid. They don['t have elasticity to them like they use to. That is why I take magnesium and oils and drink a lot of water. I am trying to think of the word that I want to use, but my fibrofog is getting the best of me. I think they get kind of stringy, stiff and not flexable. That is how mine feel. One girl who gave me a massage said that the muscles in my back felt like cable. Metal cable. I have many fibros knots in my muscles. And most of them are in the area where the muscle attaches to the bone. Wierd. But I am lumpy... lol...

But it is really important to stretch. But do it gently. Don't pull the muscle as far as you can atleast until you get them in flexible condition again. Do this every day and night. I use meditation to relax my muscles. It really works. But you have to focus on that certain muscle and actually visualize it relaxing. You tell your mind to tell that muscle to relax. Andkeep doing it until it finally happens. The more you practice, the easier it gets. I can relax all of my muscles at once now. I use to take muscle relaxers, but learned the meditation and now i don't need them.

I hope that your muscles relax so you can get a break. Do you take muscle relaxers? There are many different kinds. But I find when I hurt, my neck and shoulders get tense. Then I tighten them up, and when I do that, they hurt even more. So I have to not let them tighten up. And that is where the meditation comes in handy.

Hope you feel better soon.

Hugs, Karen
Posted 5/16/2012 4:15 AM (GMT 0)
Crews,

Wow, that sounds really hard to deal with. I wish I had some ideas, but it sounds like you've tried anything I could think of...

I suppose you've also tried sleep aids? When I was diagnosed with fibro, the first thing my dr did was get that under better control, and my pain level (and muscle spasms) did calm down alot.

Good luck to you.

Debbie
Posted 5/16/2012 5:55 PM (GMT 0)
Crew- welcome to the fibro forum. It sounds like you have had all the test done to rule out other diagnoses. It's not uncommon for a fibromite to think they have something more then Fibromalgia. I know for many years I had test after test done trying to find out what was causing all these muscle issues. My muscles would feel like rubber bands, sometimes it would bring you to tears. I also had a page long of other symptoms that went along with this. I can totally relate to your post. For years My life was miserable. I was on all the narcotics, muscle relaxers, and whatever would take my pain away. I finally was tired of this life and began to search on line about Fibromalgia. It was here on this site that changed my life. I began to reach out to others and learned my alternatives. I am happy to say that I am doing great and I have my life back. I changed my meds to mostly natural supplements. The magnesium was the biggest thing that helped the muscle cramps. We are all so different how we respond to treatments. So remember to ask you Dr. before trying anything new. My changed didn't happen overnight. It took awhile, but it was all worth it. I know my husband and Dr's are glad to see me healthy again. It really does sound like you might have Fibromalgia. I hope you can find a Dr. that hears your cry. It was my psy. Dr. that believed me and help me turn my life around also. I hope to see you around again.
Posted 5/16/2012 6:51 PM (GMT 0)
Good aftrnoon Crew, Please ask your doctor to test your magnesium levels. They will probably be very low. Ask the doctor for prescription level of magnesium while otc helps what a chronic pain person needs is that high dose of mag to get your count up agani then you can go on an otc for maintanence.once the count is normal. I didn't know about the mag until my GP ran the test and was amazed the number was so low (I too have stumbled along with fibro for yrs). I've spent time crying and depressed looking for a diagnosis then yrs of trying to get something to help the pain. I was diag. when most drs. thought fibro was imaginary. Get your primary to run a mag test along with a general bloood panel to help diagnos that problem.
Unfortunatly all of us Fibro warriors present differently and we react differently to different drugs I did Lyrica and savella neither of which agreed with my body. I am using celebrex now I did need some tweeking on that but after finding the right dose I am so much better.
That does not mean I don'thave flares. They come and i see them for what they are and try not to react to the pain as much as possible. finding a good massage therapist is the best thing Idid for myself also. Do not be afraid to tell them if they are hurting you or digging into your tender points, sometimes the tender points are so rigid the massuse needs to work around them to loosen them up! I spent 8-9 months going to a chiroprator who while his intentions were good but did nothing to help unfortuanatly I got worse to the point of barely walking. Most chiro really don't get that not everything is solved with a straight spine (mine is so twisted and messed up its silly).
I totally understand a chemicall sensitivity, I have them and they'll send my fibro out of control. Ijust need to stay away from heavy chemicals, some airfressheners and even scented laundry or cleaning agents. My neighbor sprayed a very serious weed killer on my yard and I didn't know he got it there, In the past when I knew he used his "agent orange" I had to stay in the house for a week or more until the smell went down. This last time he got it on my grass because he sprayed on a windy day, so I stayed in for a week or so, went out to work my garden and went into a reaction that sent me to the hospital for a couple days. I have to wear rubber gloves to work in my yard and can't sit on the dirt , I have to spread a sheet and move it around as i work( that has to go in thewashand then get aired out) For the chem sensitivities you can try an antihistimine, It will help but you will need to find what triggers and cut what you can out of your life and use antihistimine for attacks asap you notice reactions.
People will tell you exercise is important and it is but don't be hard on yourself. If all you can do is walk outside and around the yard or even when I was really bad walking circles around the house helped!
Be kind to you, try massage, try meditation, try everything and find what works for you!! a fibro warrior is just that, some days the world just beats us up and some days we just smile and enjoy!!

I hope I helped a little I know it's hard to get flares to settle down but you will and then those answers become your bible of life. Just be easy on yourself, You didn't wake up one day with this and it will take time to get it under control. enjoy every little success you have against the Fibro, You will be able to be a general in this fibro warrior battle!!
Linea
Posted 5/16/2012 6:54 PM (GMT 0)
PS: sorry For some reasons docors are finding that anti seizure medications do wonders for Fibromyalgia, they don'tknow why but it's one of the drugs in my arsenal against the fibro!
Again You are on your way to being a fibro warrior, You are worth the fight@!!
Love & light
Linea
Posted 5/18/2012 1:24 AM (GMT 0)
You guys are all fabulous andi want to thank you for all of the suggestions and positive reinforcements. I have tried so hard for so long to stay positive about this. This has been one of my toughest weeks so far. I have always tried to get up early and put my tennis shoes on first thing because for some reason that makes me stay away from sitting on the couch, however I've been sleeping in so late this week and spending all my time on the couch. Reading your responses let's me know that I can get through this and I am not alone. For that I have to thank you all so much!

I have tried the magnesium for some time and it was a prescription strength one. It did not help. I take an insane dosage of muscle relaxants and they almost seem to make it feel worse once I wake up. They also act as a sleep aid as they knock me out most nights. I have tried anti seizure meds. A neurologist tried them for my migraines and those did nothing. I need to check on the chemical aspect. I lived in a very old apartment when this started happening. However, I wasn't yelling hair yet so I wasnt exposed to all of those chemicals when it started. What are my first steps in getting that started? I've tried massage numerous times (I worked at a very high end salon when I was working and the massage therapists had at least 5 years of experience and had to come highly recommended to even be considered for a job) but it just seemed to irritate the muscles and make them feel worse. I have had at least 100 steriod shots/epidurals in the muscles so I'm sure that's not helping. I've been doing them for years regularly because that is the only relief I can get even for a day or two. I have not tried biofeedback yet. I need to see if my insurance will cover anything like that since I'm not working I can't afford anything they won't cover, and my disability claim was denied. Which is another reason I think a diagnoses of some sort would be helpful. I'm going to contact a lawyers about that so any suggestions relating to that would also be much appreciated! Thanks again for all of your help, and if any one has any other suggestion please let me know!
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