Personal Experience - D

I have had Rippling Muscle Disease (cav 3) for over 2 years now. I don't know if you're familiar with RMD, doctors here don't know anything about this. I've done many tests, in which a few things were abnormal like, CPK in the blood, which was about 500, and that was probably of the cycling and playing basketball a lot, on the EMG it was discovered extended relaxation on the muscles (i will attach the document) ,ENMG is good, CT was normal, echo is within range,MRI is also good (attached). I apologize for not being able to attach every document, it's in Macedonian or Serbian, i think it wouldn't be helpful.


I was diagnosed couple of months ago, the doctors from Serbia did the tests in UK, and i still don't have the paperwork, they are waiting for my parents and my sisters results and they will send them all together. I know that genetic diseases can't be cured, but I'm hoping that there is something to menage it. From what I've read, RMD patients don't usually have the exact same symptoms. The muscles move like waves, so i just call them waves. Here are mine symptoms:
-Changing every muscles position helps to make a wave, for eg. sitting down (the muscles on the behind and quadriceps), stretching the arms forward (biceps), it's like this with every muscle. And a few days ago it was while walking.
-The pain about 7 or 8 out of 10 when the wave occurs.
-A lot of chest pains, exactly above the heart, and nothing to indicate something with the heart or lungs.
-I didn't gave up on sports, but almost every time i do, i get chest pains.
-Fasciculations.
-Depressed and nervous (i don't know if it's of the RDM, or it's that i have something that i couldn't explain for a while)
-Random parts start to hurt for a couple of seconds (part of skin, random part of a muscle, i still haven't got it when and where the next pain will occur)
-I don;t know if it's relevant, from a couple of weeks ago i started to get skin allergies from shower water. (itching)
-And one pain that is very ugly, between the legs, i don't know when it happens or why.


Besides cocoa and room dust, i'm not allergic to anything else.


I'm not taking any drugs.once or twice because I couldn't sleep of the pain. I haven't stared any therapy because we don't know what to do. There is only one doctor that know about RMD, and she's from Serbia. She said if the pain is unbearable i should start it, but it might not help. I was wondering if there is something to stop the waves from happening and ease the pain,


Another thing that was checked, potassium calcium sodium and magnesium were withing range.


One thing that i forgot to mention, a small fist bump in the biceps for eg. can cause extreme pain and waves.

There is no cure for RMD, only treatments that might help with the pain, but so far the medication doesn't work as it should.

58 comments:

  1. Male, 30, diagnosed with Caveolinopathy (Rippling muscle disease), problems with muscles started 1 year ago:
    - muscles in legs got pressure sensitive
    - pain while/after exercise
    - muscles in legs and face getting weak after little exercise (max. 5-15 min walking / laughing)
    - fatigue
    - fasciculations (whole body)
    - percussion induced muscle rippling since childhood, but not associated with any kind of disease (no pain)
    - EMG okay, CK-blood okay
    - mother with same disease but just mild symptoms.

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  2. hello once. I am 29 years old and female. I'm from Germany. I ripplings muscle disease all my life. Also with me CAV3 gene. Also with me moleculargenetic confirmed.
    It was typical: As a child stand toe walking after lay down. And illness with fever in extreme sports. For example, wave motion of the muscles in collisions.
    Today it is still the case.
    Sometimes muscle spasms occur simply on that.
    After remain in a position I can not move the muscles directly.
    I often heart pain.
    I currently have problems with extreme tension in the shoulder area.
    Magnesium is the only thing I am doing currently against it.
    In March I have after a very long time again an appointment at the Muscle Center. I hope to new research.

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    1. what happened at your appointment? anything new

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    2. Hallo ich komme auch aus Deutschland mit der Krankheit. Würde mich über Kontakt freuen. Bin 31 und W.
      bounce_ck@yahoo.de

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  3. My son is years old. We are in Nashville, TN, USA. No doctor could figure this out. We finally found it on the internet tonight. Started in the thighs when he was about 9 (7 years ago) and just in the last year, it has spread to the rest of his body. Pain is not unbearable and spasms/waves last about 10-15 seconds unless he is tensing the muscle, which makes it last as long as the muscle is tense. ANY help in this area would be appreciated.

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    1. Hello Elizabeth, I was hoping that doctors from USA would know a lot more because doctor here haven't heard of RMD. Things that might help: vitamins, I take one pill a day, it's called Brainvit (healthaid.co.uk), it doesn't help a lot, it lowers everything about 20-30%. You mustn't take muscle relaxants, you can't take diazepam (and drugs like that), same goes for anti depressives, anesthesia only in liquid form, not gas anesthesia. I don't know why, that's what doctors have told me. If you can, you should go see a doctor who can prove cav3, and see if it's benign or malignant. Feel free to ask me anything, you can write me on my email: dimitar.dungevski@icloud.com

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  4. Hello I am Ethan. I am 17 year old male and have had the waves my entire life but never really experienced pain from it. The past few years I realize i experience a lot of pain from it. Especially during my workouts. After my workouts my muscles get so tight and stiff that I cant even move them and they ripple even more. Another thing is when someone hits my life for example my muscle will bunch up. I realize that my muscles seem to strain very easily to where the muscle will look deformed but will return to normal and function normally within 1 night sometimes 2. Anyone figure out how to ease the pain from RMD (rippling muscle disease)?

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  5. Hello Ethan, Dimitar here.
    There is no cure for RDM for now, just some stuff that might help you. But first of all you have to stop working out. You should check your blood for CK (on muscles), it could be high, and if it is, it's very bad for your kidneys, you can destroy them.
    You can take magnesium direct, neurobion, vitamins and stuff like that, and you need to contact a neurologist to give you carbamazepine, 1/4 per 12 hours (200mg). Also there is medicinal weed you can try, and medicinal weed cream, so you can rub your muscles with it. If i can thing anything else I'll let you know.

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    1. what happens if i continue to workout? is it bad? im addicted to working out and my sister actually had kidney problems and she has scarring now. no docotr knew why but it must be from high CK?

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    2. also do you have RMD yourself?

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    3. Yes, i do have RMD, this is my blog. I created this blog so i can find more people like us. In my case, CK is the problem i had to stop working out, it should be bellow 150, i had 1500. You should make tests.
      It's very bad if you have it like me, the kidneys will fill up with toxins from the muscles. I didn't understand the last question.

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    4. was there any symptoms that you had high CK? if so what were they and what treatments have worked for you.

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    5. The burning that you feel in the muscles after working out, my doctor told me that. I don't know if there is treatment for that.

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    6. do you have muscle hypertrophy in your calves or arms? i have increased arm and calf size

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  6. my main concern is why i have to stop working out

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  7. Hey guys, got RMD too, muscle fibers moving on the chest/biceps/deltoids/side of the back and quads.
    Noticed the rippling for the first time when i started lifting at 16, now i'm 19.
    I workout 6times a week, and i can say that the day after workouts (when body is recovering) the Rippling is amplified, muscle feel so thight and move like crazy.
    Four days after my workout when my muscle group has completely recovered, the Rippling is really weak or even inexistant (one day i was trying to show it to the doctor but i was 1week off from the gym, so the rippling wasnt showing...).
    So, tipicaly Rippling is only there the 4days after i workout a muscle.

    And yeah, all the doctor i showed it too said it's nothing "just a little myokimia, it's norhing", i knew it was something else, i find rippling muscle disease looking at bodybuilders on instagram, a known one called "Uzoma Obilor" has it and i saw in the comment the name of "Rippling Muscle Disease".
    Now i know what i have, i'm going to do a lab test in a GeneticResearchLab in my city.

    The pain from the Rippling is not a big deal for me, i workout 6times a day, so i'm stiff all week long anyway, but it's definately noticeable.
    Sometimes i want to stand up and have to wait my quad stop rippling, or want to grab something and have to wait my biceps stop rippling...
    But how cool does it looks! When i show the Rippling to friends or random guys in the gym they are crazy :)

    The only concern i have is the risk for the heart, hope i will never have problem with that, and i hope the muscle pain will not get higher and higher with age, because i go hard on my body each day and dont really know how long the RMD can take it...

    Btw, I really want to know how rare this disease is!

    PS: Sorry for bad english or grammar errors, wrote this quickly :)

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    1. OMG you know uzoma obilor too?. I am very into working out and bodybuidling. so cool to see others with rippling muscle disease that workout to. whats your instagram?

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  8. @pacokltz is my ig, but don't have a lot of pictures, need to start posting this year :)
    Btw look @joesthetics he has the RMD like uzoma too and look thick.

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  10. I have rmd to. Does someone know if its dangerous ?

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    1. It's not deadly, if that's what you're asking.
      But you can have problems, for instance I can't work out because it will destroy my kidneys. Feel free to ask anything.

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    2. do you ever have pain in the muscles? i always do and need something to stop it.

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    3. Contact your neurologist and ask him for tegretol 200mg, start with 1/4 every 12 hours, and you can up the dosage if needed. That's what i'm doing, it's not helping a lot, but it makes a difference. But you should know that if you start taking it you mustn't stop, because you can never start taking it again.

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    4. My neurologist said there where 2 medicin one was something with benziline or something and the other was valium he said that it was not that hezlthy to take the medicztion and ask me if i have alot trouble with the symptoms and my answer is no. So i dont need medicztion. Im only afraid for dying earlier and not can have a hezlthy life

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    5. I get a little bit pain when the ripple is Busy in my muscle but it feels like one cramp so i learnd to live with it and its not bothering me animore. Not dramatic pain. Just a little bit. And the kidneys is because u have a high creatine kinase i guess? Well i read alot about it because mine was 580. The doctor said its not dangerous but he askd me to stop fitness for one week and lookd if it came from the fitness.. so i quited fitness for one week and took blood and it dropd to 188. So normal creatine kinase. Someone that is 'healthy' i dont mean we are not ;p but a healthy person that fitness also have ck's above the 600. There are bodybuilders that have ck higher then 10000. So i guess its normal

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  11. I have it for 4 years now and i can do anything. I fitness all the time i work. And somethimes i feel the rippling... like its a cramp thats running over my muscle and then i need to wait till the rippling is over. I also have fasculations. Somethimes in my back one hit. Then 3 in my shoulder. Then one in my leg. I also have the percussion in my bycep and hands... when i had it in the beginning the rippling was worser and i had it more then now. Its like the more i dont think about it. The less i feel it.and yes my question was if im gonna die early...

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    1. so is there ANY way to get rid of the pain? i lift weights and it causes a lotof pain and icant stop working out

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    2. Stretching before ure exercise i guess. I guess the pain comes before u fitness because we have stifness in our muscles

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  12. yes my muscles are very very stiff. any medicine or ways to get rid of the stiffness?

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    1. U also can take a warm bath. Or hot shower. I think u also can do massages so the muscle relax. But if i was u i shall not take medicin.

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  13. U can take magnesium and u need to use ure muscles alot so its always souple. And for the rest i shall take nothing because all the medicztion they give are musclerelaxers and u could get muscleforce weakness so for me the choice is easy. I guess we need to learn to live with it

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    1. yeah i will lift weights and my muscles will get super stiff and start to hurt when i stop. my muscles will also get super stiff and start to hurt when im in COLD temperatures and when i dont move for awhile like when im in school

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  14. Hey how are u all? Is there is someone that has fasculations over there hole body?

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    1. Hello,
      Regular fasciculations, or the waves?
      Either way, i have both all over.

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    2. The waves i have when i move my muscles...and the fasculations i have when im sitting still... somethimes one in my leg then 3 in my shoulder then one at another place... i dont know why but im always afraid of having ALS...im continue fixated at my tongue if i dont have the fasculations there and continue focussed at my speech and swallowing...

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  15. Who has fasculations on thete hole body?

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  16. Replies
    1. if your talking about the rippling it will hurt. it happens on every muscle. How does it feel for you

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  17. Do someone has tong fasculations?

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  18. Just finding out about RMD. Diagnosed with Myasthenia Gravis almost 2yrs ago. First noticed muscle rippling at that time-arms,hips, & thighs. More noticeable just before I'm due for my Myasthenia Gravis medication (pyridostigmine). That generally makes the rippling go away til my next dose is due.

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    1. does this medication stop any pain that you have with your muscles? does it completley stop the rippling?

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  19. How did u find out about the MG?

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  20. Hello all! Personally I do not have RMD. I am currently a college student, studying to be an occupational therapist. I was assigned RMD for a research paper and to include what occupational therapy can assist with. For those of you that are unfamiliar with what OT is, it is a profession that assists individuals across the life span to maintain functional, and meaningful occupations (not just jobs, but everything that you do in your daily life, being a parent, spouse, hiking, baking, wood working, etc.). I came across this blog and was curious if you would be willing and able to assist me in what helps you, what does't help, etc. Anything that you feel would be of assistance, I would love to hear about it!!

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  21. Does bloodwork ever go down if you have RMD? My son was recently diagnosed and his levels are all elevated.

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    1. his CK levels were most likely what was elevated

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  22. I was just diagnosed with RMD after experiencing symptoms for 18 months. Awaiting genetic testing. I'm unusual--age 74! Usually it starts much earlier. I'm in Toronto Canada and I'm told there are no specialists here.

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  23. Has anyone found relief? My muscles are so stiff and achy. My muscles ripple with every stretch and movement.

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    1. My only help is Tegretol (carbamazepine). It only helps up to 50%, for me.

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  24. Hello, i am from germany, 31 years old an female. This year i was Diagnosed with RMD. My CK was 1800. the doctors Said i should Drink a lot because of My kidneys. I have the typical Symptomes of RMD…

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    1. Hey, i'm from Germany, too. I'm 29 years old and male. The Diagnose of RMD with typical Symptomes and a high CK up to 2800 i've got since 2019. The Doctors have no idea to keep the symptomes down and i try everything to reduce the pain, but nothing works really good.

      Perhaps we can go in contact and talk a bit in german?

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    2. Hi, you can contact me if you want, but i only know English

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    3. Hey ich bin auch aus Deutschland. Du kannst mir gerne schreiben. Hab die selbe Krankheit. Meine Mail Adresse ist : bounce_ck@yahoo.de.

      Hab im Januar wieder einen Termin in der Uniklinik in Düsseldorf.

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  25. Perhaps my son has that disease

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