Cape like pain on shoulders & neck..help

Pull up a chair, grab a cup of coffee and have a nice long chat. This forum is the perfect place to get to know one another on a more personal basis. Share birthday or get well wishes, funny stories, jokes and interesting tidbits.

Moderator: pmaxwell

Cape like pain on shoulders & neck..help

Postby Irene Blacklock » Mon Oct 17, 2011 5:33 pm

Hello:
I have a syrinx only, which is c3-c7

I frequently get that feeling where my shoulders and neck get really tight and hurt and it frequently it ends up causing me to get a migraine. I can't take non-steroidal anti-inflamatory drugs any longer as I have been newly diagnosed with kidney disease. So I take Tylenol when I get that feeling but it really doesn't do much. I take topomax, which is supposed to help to prevent migraines, but it doesn't seem to be working very well since I've been getting this cape like feeling. Fortunately it isn't every day.

I understand that some people have been prescribed a muscle relaxer for this and it helps. If so, what are you prescribed and what dosages? Some of them I can't take because of the kidney thing, but I'd like to know what works for you. Then I'm going to take the information to my doctor.

My new neurologist really doesn't know much about sm and I haven't been able to find one in the San Diego area that does. She is an MS specialist. I was referred to her when they thought I might have MS. So when my original doctor retired (due to cancer) I went to her. So...the more information I have the better!

Thank you in advance! And may God watch over you and give you peace.

Irene
Irene Blacklock
 
Posts: 39
Joined: Thu May 15, 2008 12:32 pm
Location: Bonita, CA (next to and south of San Diego)

Re: Cape like pain on shoulders & neck..help

Postby phyrehawke » Wed Oct 19, 2011 2:35 pm

Hi Irene,

I'm sorry I didn't reply right away. I have not been on the ASAP boards much lately, as I've had other issues on my plate. I know cape pain, although I think the term confuses the docs. It's as if they've never seen a real cape. I own several and perhaps I should wear one in sometime? Maybe it would be better if we called it "cloak pain"? Or "shawl pain"? lol Sorry. Just making fun of the multitude of communication difficulties over the years. I'm sick of the lack of understanding.

I am also in San Diego County, but up in the other direction...Escondido. Another gal that is sometimes on the board, Janice, lives here also.
I have a neurologist who knows about SM, and has several patients with it (partly because of me, lol) but it is not what he usually treats. However, no NL specializes in SM. His name is Dr. Ian Purcell and his primary office is in Alvarado Hospital by SDSU, off I-8.
Or, if your NL cares, and she's interested in learning, it would be good to have more NL's in SD Co. who know about SM and how to treat it.
You might ask about nerve blocks and trigger point injections in conjunction with cyclobenzaprine/flexeril (muscle relaxer)? That might help the topamax work better? Also...is your topamax dose once daily or twice?
And Do NOT get nerve blocks from somebody who doesn't know what they are doing.
Please feel free to Private Message me here, or email me at phyrehawke at yahoo dot com.


Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
phyrehawke
 
Posts: 628
Joined: Tue May 13, 2008 3:23 pm
Location: Southern CA

Re: Cape like pain on shoulders & neck..help

Postby smoovie0704 » Tue Oct 25, 2011 11:05 am

Hi,

I have only CM not SM and experience that same cape like feeling. Tyenol? What's that, haven't used that successfully in a few years. I was on Topomax but with little success. Currently medication free and trying to live the best life that I can possibly live but I am curious why, if so many of us describe this same sensation, why the symptom is not addressed more frequently by the specialists? My NL is great, but sometimes dismisses symptoms I have which I find others have as well.

Stephanie
Complex Migraine w/o Aura
CM 9mm
Fibromyalgia
smoovie0704
 
Posts: 297
Joined: Wed Dec 03, 2008 10:55 pm
Location: Queens, New York

Re: Cape like pain on shoulders & neck..help

Postby Irene Blacklock » Tue Oct 25, 2011 2:26 pm

Hi Stephanie.

I too am surprised that there isn't more information on this subject. It seems like a lot of people with cm and sm have this feeling. I understand that a muscle relaxer is often prescribed but I don't know which one. I was hoping that more people had answers. I'm going to make an appointment with my ns today to see if she can give me something. I'm averinging 10-12 migraines a month and that's with Topamax. I used to average only 2-3 if I used Topamax before this capelike feeling started.

I'm glad to hear you're medication freel That's a real blessing!

God bles you,
Irene
Irene Blacklock
 
Posts: 39
Joined: Thu May 15, 2008 12:32 pm
Location: Bonita, CA (next to and south of San Diego)

Re: Cape like pain on shoulders & neck..help

Postby powerlineman » Thu Oct 27, 2011 7:05 pm

Yes have it all the time with my SM. It seems to be a common problem with cervical syrinxes.

I'm on Skelaxin 10mg which works pretty good. I've been on Robaxin and Flexeril but both became useless to me. The Skelaxin is way better than any other muscle relaxer I've had in pill form.
SM only (C2-T1, T10-T12)-Cervical Post Operative Radiculopathy-Degenerative Disc Disease-Anxiety-Depression-Chronic Fatigue-Osteoarthritis-Bulging Discs (T5-T7)-Sarcoidosis-Spina Bifida
powerlineman
 
Posts: 243
Joined: Sat May 19, 2007 8:22 pm

Re: Cape like pain on shoulders & neck..help

Postby Irene Blacklock » Fri Oct 28, 2011 7:19 pm

Thank you for responding.

I hadn't heard of Skelaxin. Roxanne had mentioned Flexeril. Whatever I take, it has to o.k. for people with kidney disease.

I actually got over my cold and went to my ns yesterday. She said she wanted to try me on Flexeril to start out with. She thought I may need an anti-spasmatic instead of a muscle relaxer, but she wasn't sure which would work better. She is going to have me go to another doctor and have Botox injected onto my neck and shoulders to see if that will help. I'm at the point that I'm willing to try anything. I've had 11 migraines this month and they all started with this cape like feeling. I'm going to mention the medicine you take on my next visit if this stuff doesn't work. Thanks!

I know it's hard. I rely a lot on Romans 8:28 All things work together for good to them that love God. It gives me peace.

God bless you
Irene Blacklock
 
Posts: 39
Joined: Thu May 15, 2008 12:32 pm
Location: Bonita, CA (next to and south of San Diego)

Re: Cape like pain on shoulders & neck..help

Postby Jankster253 » Wed Dec 14, 2011 12:22 pm

I have the same exact thing! It comes and goes and I never know what is going to trigger it. It's like a burning nerve pain along with tingling from my mid back up to my neck in a "cape pattern". Yesterday it was so bad I was absolutely miserable. I take Tramadol, Robaxin, Flexeril, Naproxen.....but none of them seem to work very well. I also get extreme muscle tightness in my upper back, shoulders and neck that won't release for anything. I go to massage therapy and physical therapy and it helps a little bit. I have seen 3 neurologists, 3 physical therapists, chiropractor, acupuncture and massage. Will be going to see a pain specialist soon. Having SM is so frustrating, I never feel like I get any answers and feel like there is not a concrete plan of care for my diagnosis or symptoms. I made an appt with my NS yesterday and they said they can't get me in until Jan 31st!!! :( Lately I seem to be having more symptoms, increased migraines, more numbness/tingling in my upper back, shoulders, and sometimes hands and face, and vision problems. I have been very active/athletic over the last several years and I have really had to slow down, it is so hard!! Yesterday all we did was go Christmas shopping for a few hours and I was in pain for the rest of the day!! Alright.....I will stop complaining.....it is just nice to have a place to post my feelings and hopefully someone will understand. Hope everyone has a great day. Oh....btw, I'm a new member today. Was diagnosed with Ideopathic SM by accident 5 years ago after having a MRI for my migraines. My NS said he didn't even know what a syrinx was so he had to look it up. My last MRI was 3/15/11 and shows mild dessication from C2 through C7 with a minimal disc herniation at C5/C6, unchanged prominent central spine canal (syrinx) extending throughout the thoracic spinal cord. I am a part time nurse and mother of 3. There's my story. :)
Diagnosed with SM with unknown cause since 2007
C5/C6 prominent central canal
Syrinx measures 1mm T-5 to T-11
Degenerative disc disease
Chronic migraine
User avatar
Jankster253
 
Posts: 26
Joined: Wed Dec 14, 2011 11:42 am
Location: Tacoma, WA

Re: Cape like pain on shoulders & neck..help

Postby gunflint » Wed Dec 14, 2011 1:50 pm

First of all welcome. Forget the NS that you've been going to unless the NS has a lot of CM/SM experience. The first rule of dealing with CM/SM is find an expert. I won't diagnose for you but I would be highly skeptical of Chiropractors, Physical Therapists, Acupuncture etc. These are all honorable and valuable professions however very rarely do they help and in some cases they can cause irreparable damage to someone with a syrinx. I repeat find a CM/SM expert in your area and make an appointment asap. Good luck.
gunflint
 
Posts: 266
Joined: Tue Jun 14, 2011 8:10 am
Location: Duluth Mn

Re: Cape like pain on shoulders & neck..help

Postby Jankster253 » Wed Dec 14, 2011 9:53 pm

I have been to the CM/SM doc in Seattle, Dr Richard Ellenbogen, all he did was refer me to a pain specialist. I was stubborn and didn't go......but now I'm going because I feel so bad. I'm miserable when I don't go to massage and physical therapy because my muscles are so painfully tight all the time. I don't go to the chiro often, ONLY when I can feel that my spine is out and it is driving me crazy. I refuse to go back to the acupuncture guy because he really hurt me last time, I think he hit a nerve in my mid back. It was awful! I'm thinking I will be making a trip back up to Seattle very soon. I also see another MRI in my near future. Lately the burning nerve pain in from my mid back up is really bothering me. I'm so so so annoyed and frustrated with all of it. I just laid down for a nap before working graveyard shift tonight and I can't fall asleep because I can't get comfortable. It's going to be a long and painful night at work tonight. I wonder how much longer I will actually be able to work as a nurse? This really scares me! :(
Diagnosed with SM with unknown cause since 2007
C5/C6 prominent central canal
Syrinx measures 1mm T-5 to T-11
Degenerative disc disease
Chronic migraine
User avatar
Jankster253
 
Posts: 26
Joined: Wed Dec 14, 2011 11:42 am
Location: Tacoma, WA

Re: Cape like pain on shoulders & neck..help

Postby Irene Blacklock » Mon Dec 19, 2011 7:17 pm

Hello Jankster253

Sorry to hear about the tightness and I understand. I had 12 migraines in October and they started with the cape like feeling. I went to my NS and she prescribed the muscle relaxer, Flexeril. It really helped. I only had 3 migraines in November and only one so far in December. Next month she is sending me to a different doctor to starti me on Botox injections in my neck and shoulders. I understand that it is very helpful with migraines and the tightness in the cape area. It's worth a try anyway!

If you ever get the chance to go to one of the ASAP conferences, it is well worth it! I've gone twice and what an eye opener. You meet so many people going through much of the same things and it's a learning exjperience as to how they're coping and what works or what doesn't work. And the doctors are so informative!

Regarding sleeping, I find that sleeping on my back and using two pillows, so that I'm not laying flat, seems to help. Unfortunately we all seem to go through these things and sometimes what works for one of us doesn't work for the other, however, sometimes it does and that's the good part!

Hang in there! God bless you!
Irene
Irene Blacklock
 
Posts: 39
Joined: Thu May 15, 2008 12:32 pm
Location: Bonita, CA (next to and south of San Diego)

Re: Cape like pain on shoulders & neck..help

Postby lulu211 » Thu Dec 29, 2011 10:44 am

I have had this also/for migrane headaces/there is an old medication that works great for mine.Fioricet/also comes with asparin/fironel/not sure of spelling on that one.The doctors have given me Imtrex/but not good if you have high blood pressure.The Fiorict helps with headace and releives neck pain too.It has butalbital/apap/caffeine is ingredents.I also had epidural injection in neck which helped alot.Good luck.Skelation Is a non narcotic muscle relaxor which takes time to build up in your system but worked good for me/flexril made me to sleepy.
:shock:
lulu211
 
Posts: 7
Joined: Wed Jan 21, 2009 8:10 pm

Re: Cape like pain on shoulders & neck..help

Postby lulu211 » Thu Dec 29, 2011 10:48 am

I also bought the tempur pedic pillow top mattress with the elecetric base so i can adjust my postions/have had so much better sleep since that bed.I would only sleeep 1 hour at a time and be up in pain. good luck. 8)
lulu211
 
Posts: 7
Joined: Wed Jan 21, 2009 8:10 pm

Re: Cape like pain on shoulders & neck..help

Postby Irene Blacklock » Thu Dec 29, 2011 5:18 pm

Thanks for the information Lulu. The bed you have sounds great!
I'm really looking forward to the Botox injections in my neck and shoulders on the 16th. Hopefully they will help this cape feeling. I've heard some good things about it!
Have a Happy New Years!
God bless you!
Irene
Irene Blacklock
 
Posts: 39
Joined: Thu May 15, 2008 12:32 pm
Location: Bonita, CA (next to and south of San Diego)


Return to ASAP Lounge

Who is online

Users browsing this forum: No registered users and 8 guests

cron