Sister with Camurati-Engelmann's disease and other people I should never train. Help.

[withboldentreaty]

Hey coach,

If you've heard of Camurati-Engelmann, I'm willing to bet you have a family member with the disease. It is a very rare occurrence but the symptoms are not terribly rare. Muscle weakness, difficulty gaining weight, and chronic bone pain are among the worst symptoms which you may guess sound like weight training and proper nutrition could do a considerable amount for in the way of treatment.

I am not a doctor and I am not a strength coach. I am a family member who loves his sister, wants her to be more able, and wants her to be happier. Coaching or telling family what to do is hard enough--not being a properly trained professional increases the difficulty of this issue.

Everything I know from SS leads me to believe properly designed strength training could help her. Brian Jones' talk made me realize how substantial that help could be. If you or anyone has experience training individuals with any related or similar diseases/symptoms I want to hear from you. If anyone has data on strength training for individuals with similar symptoms I want to hear from you. If a particular SS coach has particular experience or interest in clients of this type please tell me. If anyone thinks they can help or could direct me to someone who can I want to hear from you.

I am out of my league here and I don't know how to help her. I can't find data on someone with this disease using strength training and I don't think her little brother who isn't even a coach should be the primary source telling her to start squatting.

Thank you anyone who read. Thank you anyone who responds.

[Mark Rippetoe]

The internet thinks that there are about 300 people with this disease. It is unlikely that any of us have any experience with it. You will be on the cutting edge. Good luck.

[withboldentreaty]

She absolutely can do this and she absolutely must want it (more than I or any person who isn't sick wants it of course). I just think hearing about more people in situations like yours will help her see the good barbell training can do. Maybe it will even make her want this for herself.

Best of luck with your training. Stay strong.

[deeprooted]

I have Hashimoto's thyroiditis, which is an autoimmune disorder. Some of the consequences of this condition I am living with are fatigue, insufficient recovery, muscle soreness, joint pain, bursitis, tiredness and sudden sleepiness, dizziness, vomiting, fainting, brain fog, depressions, panic attacks, no appetite any longer, nausea during and after meals, difficulty to digest foods and intolerances and sensitivities that weren't there before, very little ability left to concentrate and a wiped out short term memory.

I know someone who is HIV positive and trains and also someone with fibromyalgia. I'm not educated about your sister's condition, but I train through this and will not be giving up, no matter what. I would never say she can't do this. But she has to want it. Training is very hard already for people who are not sick.

Sorry for going off topic here. I've had Hashimoto as well for half my life and maybe longer and your symptoms sound to me like you are not treated or not treated well at least. My guess is that you're on T4 alone and only in levels to make your TSH go into "normal" range... which most of the time is insufficient for the typical symptoms to disappear. Taking T3 along with T4 made a big difference to me as well. Also make sure they even check your free T3 and free T4 not just TSH. My TSH had to go below the normal range for the FT3 and FT4 to actually get to proper levels. Of course this is no sure fix as your issues might be more complicated than that (e.g. too much rT3) but it's a good start as the typical doc only cares about a "normal" TSH anyway.

Moreover especially since you mentioned difficulty digesting foods: You're likely to be deficient in some vitamins and minerals that along with the hypothyroidism worsen the fatigue, sleepiness, dizziness, insufficient recovery etc. symptoms even more. B vitamins and iron for instance are involved in the formation of blood cells that actually carry the oxygen and nutrients throughout your body and people having Hashimoto's are often deficient in those (for me this alone resolved circulation issues, blue fingernails, cold hands and low energy levels). Vitamin D is also very important if you are having autoimmune issues. So get properly checked out and supplement with what you need. On the topic of digestion (this really goes hand in hand with the absorption of vitamins and minerals) many people having Hashimoto's also have low stomach acid. Taking supplemental Betaine HCL and Pepsin might therefore be key. Even for the sake of training this might end up being one of your most important supplements if you are deficient. Other than creatine I can speak of no other supplement that has helped my training as obviously as Betaine HCL did.

Also this shouldn't be news: If you have autoimmune issues avoid gluten or better yet grains in general (ok you can make an exception for whiskey). My TPO (antibodies) went from an immeasurable value (it said >5000 on the lab result) to 130 just by avoiding grains. As much as humanly possible. God knows what would happen if I'd stop drinking beer.

[David Kirkham]

Thank you guys for posting here on Hashimoto's. I am very interested in how you guys have helped it. I have a loved one with it and your description is right on.

As for the OP. I can say that I trained through a heart attack and am stronger now than before. You have to want to get better. It was Sunday night tonight and I still went to the shop and rode my bike for 40 minutes as per Jordan's orders. I haven't missed a training in 3 months straight now.

You can't MAKE her want it but if she will train I bet she will feel a million times better.