Stacey,

I applaud you. Thanks for taking on this task.

I think massage therapy is great as well as physical therapy...stretching. My opine is massage therapy is better than drugs. If you can teach yourself or a child to massage then they will benefit. Whether they massage themselves or go to a professional. However, proper exercise prior to a task like playing soccer or any sport is key. Exercise is a key component and format for someone with Thomsen's but differs. You have to learn what is best for yourself, your child. Massaging does not work all the time. The stiffness is paramount and massaging can be comforting. Diet is the most important aspect. The best way I can explain it to you is this: When you are really stiff, nothing will help...in terms of a massage. But, constant massaging I think does. Who can do constant massaging to themselves or by a professional? It would have to be constant. However, I think the most important help for those with Thomsen's is a constant physical therapy rountine, where you stretch. The next an most key factor is your diet. Our son is drug free but we watch his diet. Honestly as a person with a degree in Therapeutic Recreation, I believe that touch therapy is vital. It is the most compassionate thing you can do is touch with genuine love. Good luck with your project. Sorry, I don't agree that massage therapy is the end all. It will have its comfort but stretching prior to an activity and a proper diet, and elimination of pesticides, etc...helps so much more.

Best, and thanks for reseraching.

Hi Stacy
It is believed by at least one neurologist I have Paramyotonia Congenitia, while another doesn't know what I have and suspects spinal cord damage, or both. Have lots of tests to go through over the next month.
I can handle deep massage if I'm already hurting from an injury such as whiplash. I don't mind electrical stimulation especially when I'm real stiff which means I'm not bending, my muscles will be hard. Heat,I need warmth, but not hot. Electric blankets and heating pad after a while will make me sore, and stiff. Oils doesn't matter.
I get so stiff that unless you are very strong, you are going to get tired and sore. Electricity and heat before massage does help loosen me up so I can be massaged. Afterwards I can move and stretch, but it is work for both of us, not always comfortable, but the results can be wonderful. If not listen to it can turn bad in a hurry.
Hot tubs, and long hot showers wonderful stuff. Firm touch is better as light and tickling can be painful.
I can react very much like someone with MC, like not letting go of things, sevre muscle spasms, but I'm fine with hand shakes. Stiffness and pain can last for weeks in my case stress and cold more than diet are the cause.
Hope that gives you added insight to someone who may react similar but not the same as someone with MC.
You might enquire if they have seen a neurologist, or had an emg lately. Good Luck Rosa

I have not found massage to help my stiffness. I seem no different than people without MC. We get sore after strenuous activity that our muscles are not used to, like weight lifting, or standing a long time on a ladder (you feel in in your butt the next day). The massage feels good on the sore muscles, but I haven't found any benefit to my stiffness when I'm a good lazy American working behind a desk with no physical exersion. I have a milder case of MC than many on this site, so that might be a factor in your study.

Hope the study goes well.

I'm very luck to have a wife who understands how nice a massage feels , especially on a bad muscle day. It can help me sleep, or she can stretch out the affected areas and it helps tremendously.Just be careful not to do it too vigorously,as this will have the oppposite effect.

Type of Myotonia: dw307,2

Thank you everyone for your valuable input. I finished my paper and presented it to the class and was able to share some personal views and experiences was extremely helpful.
Thank You.
Stacey

Type of Myotonia: canurephrase@yahoo.com,4

There are over 150 massage types!
For me(diagnosed with MC) the type that is great is the Esalen Massage.
I've tried plenty and this is what is best for me.
For more information on this type of massage, you may want to look it up on-line.
I've been hurt(which lasted days) by deep tissue massages...the feeling is the same as a very bad bruise except their are no black/blue spots on the skin.
I thought I'd mention this.
Regards
Veronica

It was great to hear about the massage. I personnely find them great for the time it is happening but within a few minutes or hours and comes back with a vengeance. Yet sometimes it is nice to have the reprieve if only for a short time.

I know I'm really late in replying to this post on the forum about massages.
A chiropractor clued me in on this and it helps tremendously. If there is a muscle that is aching or that seems to be weak on my back or shoulder muscles, I ask my husband to press on it with his elbow. He is NEVER allowed to move the elbow back and forth! He just maintains constant pressure on one spot for long periods of time. The constant pressure can be painful while he is pressing, but I can actually feel the breakdown of fluids, or whatever accumulates and causes the aching. I have no pain or soreness reaction after this treatment, either immediately or long-term, and the aching/weakness goes away. The key seems to be NOT stroking or moving the muscle. I hope this will help some of you obtain relief. When my husband is not around to help me, a few times I have been desperate and have relied on the edge of a chair (not very effective), a doorknob (ouch!), and even placed a tennis ball on the floor and positioned it on the sore muscle, making use of gravity for pressure. None of these seem to be as effective as the "elbow" method!

Hi and Happy New Year! I used to really crave that deep pressure muscle tension release also, but I found that, while it really felt very good and seemingly helpful for me while it happening, it actually made my muscles quite tender and "inflamed" feeling afterwards. (I have Becker's type MC - don't know if that makes any difference) After my multiple carpal tunnel/de quervain's surgeries, the therapists did a lot of various types of massage - they felt good superficially, but I quickly realized that, for me, the sequellae were just awful - my pain increased, my dexterity decreased, and it took days for the angry muscles to quiet back down! So now, as much as I crave massage, I avoid it - sometimes I catch myself rubbing or pressing the muscles of my hands or arms - like when you bite down on a sore tooth because it feels better when you stop!!! LOL! lois