New to the board
 

Hi all !

I'm new here. My daughter has been diagnoised with Cervical Myofascial Pain. It's been a long road but I'm 95% sure that we are on track.

Many doctors, tests, procedures, brain surgery....it's a been a long 5 years.

I'm here to search for helpful ideas on treatment, and general support for myself as I'm the caregiver. I would also like to maybe help someone that is in our position.

I'm glad to be here.

Sheri (Lauren's mom)

Welcome to NT, Lauren!

I'm sure that you will find what you seek here. NT is full of wise, caring folks ready to give advice and lend an understanding ear. Thanks too for your willingness to share your experience to help others. That's exactly the sort of open give and take that makes NT a success.

Your daughter is so fortunate to have you. I often think that it is more difficult for our caregivers than it is for we afflicted. You're amazing people.

Cheers:grouphug:

Welcome Sheri (Lauren's mom),

I know you must be worried about your little girl. I guess that's a mother's job to worry.

myofascial pain is stubborn but manageable. For my myofascial problems I found PT, myofascial release education and techniques helped me tremendously. I don't like dealing with it, but I know what to do.

Here is a list of things I've tried and gotten satisfactory relief from. muscle relaxers, Advil Liquigels, yoga, aqua therapy, Kinesio tape, LED and infrared treatment pads, TheraCane, Miracle Balls, stretches, water-water-water, vitamins, good nutrition, less stress/relaxation techniques. I also found that keeping my muscles fleece warm helps tremendously-turtlenecks seems to be too tight-I guess a bigger size might work. I seldome get it but I think a good night's sleep would help tremendously. Simple fixes but requires discipline.

I would be happy to share detailed info about my experiences if you want to ask specifically about any of the above.

Jo*mar should be along shortly with some good links for you :wink:

Welcome to NeuroTalk Sheri! :)

This is a great community with lots of awesome people. I hope you'll find lots of good ideas for helping your daughter and yourself too. Take care. :hug:

Welcome to NeuroTalk. Great to see you have come to be with our loving group. There are a number of friends will to assist as we can. Just let us know how we can be of any help. We are all here to assist each other as possible.

Give Lauren a great big :hug: for me. You are in my thoughts and prayers.

Again welcome, looking forward to seeing you around.

Darlene:hug:

Wow ! thank you for the warm welcomes.

Brokenwing- I have never heard of Kinesio tape- I will be getting on this one shortly. I googled it and this will be an awsome tool to add to my collection.

Thank you everone.

hi sheri and welcome to NT.
there are so many forums here. please feel free to look around and find the perfect one(s) for you.

please let us know how your daughter is doing.

My 9 yo has Small Fibre Neuropathy.
 

Hi!

Im Kate, my 9 year old was diagnosed with small fibre neuropathy two months ago. I must mention that he has had type 1 diabetes for 7 years, which has been very difficult to control.

Which brings us to NT! I am usually very confident and upbeat, however, with a child of this age with this condition, there is NO ONE who understands or can remotely relate to what is happening. Even doctors can't believe that a child of his age had such a rapid onset of symptoms.

He is taking Amitripyline and Lyrica for his pain-he had a reading age of 12+ and is advanced with his schooling but he I am now homeschooling him because he was simply missing too much school. His symptoms are still severe enough that he have 6-7 pain during the day, and then, of course, it is always worse at night.

I think we are both exhausted.

Im so grateful to have stumbled across this valuable little community.

Kate. (Demarco's Mum.)

Sorry Sheri!

I was reading your post and wrote my own as a reply to yours!

It's great to meet you, and I'm sure we'll have plenty of opportunities to get to know ea other here!

I certainly understand what you mean when you say "five long years.." As a caregiver, you want to give everything you can to help your child, and it is agonizing when even then, it's not enough to make a bad day better.

Welcome and say hi to Lauren from us,

Kate and Demarco

Yeah, it's good stuff. Here's a link for a positive reason to try it. It is non-restrictive and helps heal

http://images.google.com/imgres?imgu...HpqB8QaFmfmHBw

Did you Google "Images" Here's that link:

http://images.google.com/images?hl=e...Kinesio&aqi=g6

It helped me a lot. I don't use it too much anymore as I'm doing much better and it's not convinent to need someone to put it on you. It did relieve the myofascial pain and allowed me to do more of my own activities of daily living. I understand it to lift the skin up just enough to let the lymphatic fluids flow, to help with healing. The underside of the tape is rippled. No meds involved here. It's mostly recommended to wear for 3 days. I wore it for 3 weeks at a time. I would trim the frayed ends down.

I did post photos of a few of my tapings that my therapist would do. I can tape my arms, neck... (meaning scalene muscles on the sides of my neck-cervical spine tapings didn't want to stay on too good. You may have to do retapings and just work with that area) ...and front areas but I needed hubby or my therapist to apply it on my back. Here's a link for my tapings, just so you can see how I done mine.

http://neurotalk.psychcentral.com/thread104454.html

When we did these recent tapings, it had been awhile since I'd used it. It didn't want to stay on at all. I was so happy as I took it as an indication that I'm a lot better. It used to stick like glue. My therapist would laugh as she jerked it off and would say I needed some fresh tape. She also wanted to order some glow in the dark tape for me. :D She's funny like that. I did learn to kind'a roll it off when I was removing it, seemed to be better than just pulling it off. You'll understand that if you get into using it.

There are a few tips I'll share with you. You can learn the taping techniques for your baby's needs. I would suggest you look for a therapist to do it the first time. If that's not accessible, you can wing by trial and error.

If you stretch the tape too tight it will cause muscle spasms. When you shower it may peel away from the skin but when you get out, put it back where it goes and kind'a hold it for a few seconds and it will restick most the time. It's best to let it air dry but I used a hair dryer if I was in a hurry. Don't rub excessively with a towel.

I should take a picture of the backside of the tape and how I would cut it to kind'a turn the tape where needed. It is setup in blocks on the back, so you'll count the blocks needed and write it down on the box for future reference and easy cuttings. You cut to form and then apply.

I ordered mine tape at the PT department, in the large box. Lasts longer that way.

If you get the tape, let me know and I'll walk you through it if you can't find an experienced hands-on person to show you what to do. Chiropractors or sports medicine providers may also use it.

It's certainly worth a try. It's not harmful. Can cause minor skin bumps if worn too long or the way I would split the tape sometimes. I would cut the end of the tape like a 1 - 2 inch V shape in some places and the bumps would happen under the tape just before the tape would split/bottom of the "V".

(The bumps were not pimples/pustules but blood filled bumps-so that kind'a let's me know it's causing blood to circulate better in the area-interesting it would be at the bottom of the "V" where I was splitting the tape if you think about it. )

Soorrrry soooooooo looong.

Thanks again every ! :hug:

Brokenwing - thank you, thank you, thank you!

Just to let you know my "baby" is 19. This conditioned has ruined all of her high school years. It's so sad. She is so angry, so hurt- I realy think that the emotional side of this is preventing her from moving forward on the healing part.

She was misdiagnoised with Trigeminal Neuralgia, Occipital Neuralgia and Geneculate Neuralgia. I flew her to Pittsburgh to Dr. Jannetta, the man who invented the MVD surgery. It was just her and myself and he put her on the operating table the next day. We had two neurlogists tell us "no way she had TN". I think the misdiagnoises was "our" fault....we wanted to lable it...fix it....before that she was diagnoised with Pseudotumor cerebri.....three spinal tabs and a blood patch on the first day of her junior year. There is so much crap in between all that too...wisdom teeth removed....stellate ganglion nerve blocks, occipital nerve blocks. Lyrica, nurotin, cymbalta ( which was a nightmare ).

I ordered the tape yesterday! :D Thank you for the links. I found a "youtube" flick on applying the tape to her neck and shoulders.

She has deep ear pain, face pain, teeth pain, back of neck pain, scalp pain, shoulder pain.

I finally took her to a neurosurgeon at Emory University in Atlanta and he was talking some crazy stuff...life changing, forever disable stuff...it scared me...but he did say something very profound and set me on the right track: " Because she had the MVD and it didn't work means that the compression was not the cause of her pain"... BINGO!!! So we went backwards from the begining when she did get some relief and that was PT, the chiro, and a good diet. I then took her to a physiatrist and he was straight up with us: she has cervial myofascial pain.

I bought the Self Treatment Trigger Point book and we have been moving forward ever since ! Thank God ! I prayed so hard everyday for something to change and it did !

Sorry so long -

Sheri

Hey

Don't apologize to me for being so long, I'm the longest.

My physical therapist also did ear pulls and hair pulls that helped tremendously with the deep inner ear issue. I had a balance issue too. See if you can YouTube that. Also, the Kinesio tapings on the sides of the neck there, that helped my hearing issues. Oh... BTW, I ended up having an outpatient ear procedure that I consider a misdiagnosis and not a need for surgery and caused me some extra hearing problems but fixed some. It's science we lay down for. No guarantees, remember?

Motor vehicle accident (MVA) in 10-2000 ... ear procedure in 09-2007.

After having issues and then going back to the surgeon --later than I should have but that's another story, he had the balls to look me in the eye and say, "Well, you know yo've got a BAD NECK!" I said, "Well, you knew that before you went in." I paid over $5,000 for that education. Boy did I learn a lot about a lot of people, politics, insurance and life on that venture. So I'm a winner for the experience I gathered. Sometmes God has to hit me broadsided with the truth about things, so I understand medical disappointments.

And you're saying cervical -- well, I now think the ear issues I've had and am still having some came from the MVA, and believe my 8th cranial nerve may be affected in some way, and the scalenes and pectoralis muscles. There are tests they can do to determine that, and I thought I'd been through them and passed the 8th cranial nerve testings but my long journey tells me when my neck is irritated to the max, my 8th cranial nerves issues are worse. Read up on that and see what you think. You have to do so much leg work sometimes, but do it you must.

Also, I mentioned the Theracane. Here's a link for them. I highly suggest that.

http://www.google.com/products?sourc...ed=0CCAQzAMwAA

this model is mine, but my arms and hands hurt to use it sometimes.

other info and models

http://www.google.com/search?source=...ane&aqi=g-p1g9

and the Miracle Ball set, here's a link for that.

http://www.google.com/search?sourcei...le+ball+method

I also bought some oversized tennis balls at Wal-Mart.

BTW, if you get a doctor or chiro, or PT or nautropathic person to write you prescriptions that it's medically necessary, you can take most things off your taxes, if you qualify, of course. Just thought I'd through that in.

Aqua therapy, whirlpools and hot tubs helps me tremendously. Don't know if you can get access to that but it is necessary.

The LED and infrared lightz are a miracle for me too. A little pricy. I've ventured into trying to start a business with the lightz, but don't have the time to devote right now, maybe before year's end will get a website up, but I do believe in their healing potentional for me. Would share more about that if you'd like.

The tape, balls and TheraCane are enough to integrate for now, so you can kind of tell what's working.

I'm not opposed to meds if her doctor prescribes it. Long story short, yes, there's always a trade, but there's no substitute for good health either. It's choices you have in front of you. Do what you have to do to get you through hopefully this roughest time and you can evaluate, adjust as necessary. Because she's young, I would steer clear of highly addictive meds, but not all meds are bad. I learned the hard way a little pill will go a long way, meaning 1/2 a Flexeril 10mg when I drive relieves pain in my arms that would otherwise surely guarantee a miserable evening. I'll take 1/2. It's a better trade.

Did I mention water. Inhale it, especially after myofascial release procedures. It will not be as painful the next day. From experience, I promise that's the truth.

(Broken Wings)

The ear thing is a killer. She cannot stand it!

I massage her SCM's every day, three time a day. I know exactly where to touch her to make her hurt and I know exactly where to massage and apply trigger point pressure to make it go away. It's absolutely amazing !

The neurosurgeon did an MVD on her geneculate nerve while he was in there. Just basically padded it off like he did her trigemenial nerve. I so regret doing all of that. Her eyes water real bad. Sometimes her tounge hurts pretty bad, but that comes and goes.

I have so many stories to share- crazy ones!

Brokenwing I really apprecaite the support :hug: it feels so good to have someone who "knows". It's very validating !

Thank you !

BTW Brokenwing, have you done trigger point injections? My daughter has and it is working very well at helping her reduce pain so that she can stretch more and work on strengthening.

ugh...

About that tongue thing... after ear surgery on the left ear, left side of my tongue was numb and strange/wierd feeling, and a metallic taste on that side. Took about six months. When surgery was over, they told me that was normal she said -- "Where we were messing with your nerve." It took right at 6 months to recover from that tongue thing and for awhile after that it would come and go infrequently. The metallic taste left first. And I could tell you when it was going to rain because of sharp pains that would happen about 8 hours prior to rain. It don't do that any more either. Takes time for nerves to settle down when they are interrupted/misfiring/injured.

Did I mention Botox injections to my scalenes. That helped a lot, with the TMJ popping-don't have TMJ pain but it pops, which that's a disc like thing getting worn down by mal adjustment or tugging from muscles. BUt me and the therapist will tell you, for about 2 weeks after Botox, no popping. It was amazing. Costly, but worth it. Still consider that as a option when and if things start to regress.

The Kinesio tape can be used on forehead, nasal and TMJ. Google it too.

I had trigger points and bilateral stallate ganglions amd a shoulder joint injection. At that time I was in very bad shape and it really didn't offset the driving pain it caused me to get to that PM doctor and the cardiothoracic surgeon and then the driving to extra jobs I had to do to pay for it. Gheezz... Live and learn. That's why I am open here on NT. Try to herd some of that off if we can and offer what helped us in hopes it may relieve your "old baby."

I can tell you pain patterns do change, so tell your "old baby" it won't always be this way. I'm am truly sorry she did miss that high school fun. She got robbed.

You're correct, in that you know misguided advice impedes healing. I am proof of that.

Another thought for you, Sheri, think of her complex painful situation as an onion. You have to peel it off one layer at a time.

No quick fixes and no magic. The more knowledge and understanding you have the better off you are. I do believe there are explanations/reasons for everything that's going on with her. Understand you may never get answers for everything. That's ok. Just find relief. I judged things as positive and negative and tried about anything that came our way.

Learn relaxation techniques, deep breathing techniques. They relieve stress in shoulders and neck area. At least you and she are buddies during this time and can learn how to breath at your ages. ha-ha-haaaa.

Yea, I thought it was funny when I was 40 and my providers were training me how to breath. PT, yoga master and PM doc.

It works. I use it often. You can't overdose on breathing and relaxation techniques.

Now, inhale through your nose, expanding the abdomen as you inhale, with your mouth closed. Then exhale through pierced lips, expelling the air from deep within your lungs and deflating? abdomen. Do this three times, with each time, going deeper on inhale and exhale, while relaxing shoulders down on each rep. If she can do this sitting up, in a series of three consective breaths, it's better results. if she's not able to jump right into it, teach her how and let her do it while she's laying around, in the shower or can't get to sleep. One breath at a time, one day at a time, on layer at a time. It will come.

Hockey gave you excellent pointers. Do consider those too.

Keep talktyping here and we'll help if we can. I do relate with her pain and feel for you too.

OMG we did stellate ganglion, and had three rounds of botox, two from the oral surgeon and one for the neuro- but all of these where done in the jaw line, forehead, back of neck very high in the hair line. We where treating the referred pain and not the point of pain. But she really is getting much more relief from the trigger points than the botox.

I have tried to promote breathing with her. It's very, very, very hard to tell a 19 year old "what to do"......I'm still on it though and won't give up.

I'm very excited about the tape. I'm sure this will help a lot!

I'm so glad I found you! :hug:

You are just what I've been praying for to get that push up the tip of the mountain!