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Scheuermann's Disease

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Posted 7/31/2012 7:27 PM (GMT 0)
Snowbunny,
Does this brace hurt? My back is excruciatingly painful- I cannot imagine the added pain of a brace. But then I don't know what it's like, thus my question.

The issue of no PT comes from recent studies (Jan., 2012, Journal of Internal Medicine) that show even light PT turns on the genes for fibromyalgia and chronic fatigue syndrome, resulting in increased muscle pains and fatigue. I know it's counterintuitive, as light exercise is good for arthritis. BUT FM and CFS are NOT arthritis. (You did read I had FM and CFS, didn't you, as this would change the treatment from someone who did not have these viral infections.)
Posted 7/31/2012 7:37 PM (GMT 0)
I was diagnosed with Fibro/CFS back in 1995...For that particular illness...exercise is extremely important. I do 45 minutes each day of walking, aqua therapy, yoga in the am/pm, massage, acupuncture, eat healthy, etc.

I know that Fibro does not have a definitive cause so I've never heard of how a gene can be "turned on" because of exercise/PT. There are hundreds of thousands of studies out there but I hope that you are seeing a reputable Rheumatologist who treats Fibro/CFS and knows all the modalities that are helpful for it.

I've also never heard that Fibro is considered a viral infection? There is a theory that CFS may be associated with those who had the Epstein Barr virus but it's still unknown for sure.

You can find many helpful suggestions and people who can empathize and share stories on the Fibromyalgia board on here...

As far as the brace...since I've only worn them for my neck as I've had 3 fusion surgeries with a lot of titanium rods/plates/screws and the last one they went in from the front and the back of my neck. It's somewhat uncomfortable but it helps in the long run. Just like PT...it's not a picnic...LOL...but it's all about doing everything possible to help my spine (I have 3 severe herniations still in lower cervical/upper thoracic and lumbar) and avoiding more surgery for as long as I can.

So...it's really about finding the best Drs. for each of our illnesses/diagnosis and taking things one day at a time.

Welcome to our boards:) As I mentioned...please feel free to post on this one as well as the Fibro board. No one has medical training to offer as we are just patients like yourself and offer our empathy, care, and thoughts/suggestions.

Post Edited (Snowbunny21) : 7/31/2012 1:44:00 PM (GMT-6)

Posted 7/31/2012 10:38 PM (GMT 0)
Smowbunny,
You must be enduring excruciating pain! I'm am so sorry you have to bear up with all this metal in your neck, then a brace, as well. I have already said a prayer for your recovery. He cares! I was diagnosed with FM/CFS at WVUniversity Hospital and am being treated by a kind Rheumatologist there.

The concept of "gene expression" is simply that sometimes genes are "turned on" while sometimes they of "turned off." Often the environment (external or internal to the body) can cause gene expression or repression. Exercise can be such an environmental influence over gene expression that results in the symptoms of Fibromyalgia and Chronic Fatigue Syndrome. The study I referred to was conducted by the National Institutes of Health (NIH), and published in the January, 2012, Journal of Internal Medicine. It is available online.
Posted 7/31/2012 10:48 PM (GMT 0)
I appreciate the prayers:) Thankfully I only wear the brace a few times a month as it's a mix between keeping my neck muscles strong, but then giving them a rest every so often.

I'm glad you have a good Rheumatologist.

I'm really not trying to debate you personally, I just have researched extensively myself and fell that exercise is crucial for those with Fibro/CFS. I actually feel worse if I miss a day or more.

Let alone all the other health benefits from daily exercise and eating healthy.

I hate to hijack this particular thread about this so I really invite you to join us on the Fibromyalgia board. As mentioned...you can certainly post both here and there but I don't want to keep talking about Fibro on this thread as it's about Scheuermanns.

It's really about what works for each of us and what our Drs. are providing for treatment. So I don't think there is a right/wrong.

I hope you take this as intended as we would love to get to know you more on the boards here:)
Posted 7/31/2012 11:02 PM (GMT 0)
EJD, I was real sick for two years and leaving the house for me was going the dr or hospital. I am disabled but it did not result from CP, its bee my friend far longer than I care to think about, lol. After a while a lot of people just quit calling. I did find out quickly who my real friends were, they are the ones that stick by you no matter what. I am fortunate enough to have some of those after the dust settled.

I noticed you and Snowbunny were discussing braces, my PM dr says no to them because she says in some instances they can cause more harm than good, she says the muscles will become weak from wearing the brace.There has been several others on here their drs have said the same thing when discussing braces. After she spoke with me about it, it made sense. My prior PM dr had me in this hard shell back brace an oh it really did make my back feel better, but it rubbed me raw and thats with it being on the outside of my clothing. It would ride up on me and just seemed to be ill fitting. I could stand about 30 minutes of it and the off it came because of the rubbing. I know a lot of folks are put in the neck braces for a bit after surgery but not left in them long term.

Take care & keep us posted on how you are doing.....Susie
Posted 7/31/2012 11:19 PM (GMT 0)
As far as the brace goes for the SD...the theory is wearing it for certain periods of time to help keep things from getting worse as well as help straighten out the spine a bit. It's kind of like braces for someone's teeth and the same concept.

But as mentioned...different Drs. feel differently about this part of treatment for SD.

For myself, as I wrote in my post, I only use my brace a few times a month for a few hours at a time to keep the curve from getting any worse than the percentage I have and to give my muscles a rest every so often. But I think with any brace it shouldn't be on for too long or for two many days as yes, it can atrophy the muscles and that is a bad thing.

That's also why I do yoga/stretching twice a day too:)

So just wanted to clear up the brace part..
Posted 7/31/2012 11:40 PM (GMT 0)
I apologize for discussing the wrong subjects on this site. I am new to a site like this.

I promise not to do so again. I thought there was a connection.

(Just for Snowbunny's help, here is the article abstract I mention...

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02405.x/abstract
Posted 7/31/2012 11:43 PM (GMT 0)
EJD....Nooooo....I wasn't trying to say you were doing anything wrong at all! I was speaking for myself....

Please....don't worry at all about it, I was trying to help bring the subject back around since I was the one asking you questions....

We are very happy that you have found the forums:)
Posted 11/19/2012 9:24 AM (GMT 0)
Hi I was diagnosed at the age of 14 and havnt seen anyone about this since I was 16, I am now 30 and my mother decided to tell me I was told I would be wheel chair bound by 40! Are there any cases like this? I have daily pain I deal with my self but I am starting to think my numbness and pain in my hands and feet are connected, is this possible? Plz any info would be good
Posted 3/7/2013 8:12 PM (GMT 0)
Hi,new to forum,I am 41 have had scheuermanns lumbar for over 20 years,I developed it as when i was an international athlete,back then coaches kids did not know that whilst going through puberty and growth spurts doing weights would be detrimental to our joints (backs),there are different types of the condition but I am sure you all have seen people with a lump at their shoulders (humf)this type presents no pain,'in my case I have this "humf"in my lumbar region,L1- L5'the soft shock absorbers in my back started of thinning,breaking up(degenerative )today they are non existent and the bones have fused together(calcified)where the shape of the normal spine should turn in s shape my back is nearly straight and my spine visable,
Posted 3/7/2013 8:21 PM (GMT 0)
Back when I was diagnosed it was not a common condition even my doc had to look it up,and not much was available regarding pain relief or what can be done to limit damage or control pain,there is not and I kid you not NOT a pill,cream,therapy,excercise I have not tried to manage its effects,when I had reached a very painful time I was told of op,s but as I was then young it was decided the cons far outweighed the pro,s,now with a history of no management from medical profession my back is tbh in a bad way,but I was told I would be in a wheelchair by 30 so I have done well,lol,but I now have reached the stage that I can no longer manage my pain and the years I was able to tolerate/manage pain at an 8 are now hard to maintain,I have 19yr son,14yr old daughter,5yr old daughter,10month old addition baby girl who is a quadraplegic spasticity cerebral palsy sufferer,she has had a rough start being born 9eks early,chromosone duplication,cp,extensive brain damage,13 heart defects so you see my dilemma regarding the undertaken of a major op rod ding my back in case of paralysis
Posted 3/7/2013 8:22 PM (GMT 0)
Please if anyone wants any info on this please fire away,x
Posted 3/7/2013 9:28 PM (GMT 0)
Hello Scheuermanns disciple and welcome to the forum. We ask all new members to make a new intro post of their own so that all members will see it and be able to give you a proper hello & welcome aboard. By posting on someone elses thread not everyone will see yours.

Also, I want to let you know that Hibee is a mod at the Fibro forum and she has this disease too, so you may want to pop over there & say hello to her too.

Look forward to getting to know you. Take care......Susie
Posted 4/9/2013 8:42 AM (GMT 0)
Hi all, I was diagnosed with Scheuermann's Disase early 2012. Not a common disease definitely not, and I understand also with the Drs not knowing a lot about the condition which can be frustrating. I have chronic back pain which does not ease, I have tried Physio, Massage, Swimming, Exercise, Acupuncture and Ive currently been referred to a Chiropractor. I have seen a Specialist who was extremely rude, who told me everything I already knew about the condition so after waiting 14 months I walked in with high hopes and walked out in tears of frustration. I have a page on Facebook which allows people worldwide to share their stories and suggest pain remedies what we have all tried.

http://www.facebook.com/ScheuermansDiseaseHelp this is my page, I welcome new LIKERS and love that I have found others with this condition as I don't know many here in Australia with the condition.

Please come over to my page

Posted 4/9/2013 8:43 PM (GMT 0)
Hey IH8SD,

Welcome to HW.... and the CP forum.

Thanks for passing along the info to the support group you've created for Scheuermann's Disease... that will allows people to connect that are suffering from this rather rare disease.

That being said -- most of us here have different diagnosis... but we all share "chronic pain".... and there's a wealth of information here, as well as supportive and encouraging members. I hope you'll keep posting here at HealingWell too.

Take good care, and - again - welcome! --Tina
Posted 6/26/2013 6:18 PM (GMT 0)
I have also been diagnosed with sd, its very painful! As I'm still at school and sitting at a desk really does not help! I find using some sort of heat. I also from time to time have to go to physiotherapy and I'm lucky enough that she is being very supportive. Recently it has been really bad although I'm on school holiday. I'm doing pilates but my physio has layed me off for 2 weeks because of my pain.
I also get numbing of my legs from time to time. Does anyone else also get this?
Its so nice to be part of this forum as I'm struggiling emotionally to deal with all the pain ect.

Rebecca
Posted 6/27/2013 12:06 AM (GMT 0)
Hello Rebecca and welcome to the forum. We ask all new members to do an intro post so that everyone will see it and be able to give you a proper hello & welcome aboard. By posting on this older thread not many people will see it.

Thanks.....Susie
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