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Hi – I haven't posted in a while because I was sooo discouraged. In November, my sed rate was over 100 and I had been on plaquenil for 5 months by then. I have since done a washout of no AP and lots of diflucan while still taking the plaquenil. I feel alot better although I 've gotten further damage in my toes which don't hurt but are really scary looking. No open toes for me ever! I am now starting a lyme protocol of doxy and flagyl, as minocin seemed to not work for me after 2 1/2 years.
Another thing that really bothers me is the way I look. Due to the RA and the plaquenil, I lost 40 pounds in the last year. People tell me how great I look (really thin) but they don't see me with no clothes. I have saggy skin in my arms and tummy that make me look 80 years old. My boobs are pancakes. Question, is this the result of the weight loss, or is this loss of connective tissue? Is this permanent, or can I get muscle mass back? How do I do that? I eat regular meals but never gain any weight. I'd like to gain some back. Would protein shakes help?
I guess you can tell I'm better because before I wouldn't care about this at all, just glad to be walking. I thank you all for any suggestions!!
Lizz,
Yes, you can get muscles back. My husband lost quite a bit of muscle due to dermatomyositis and has replaced alot of it. Adequate protein is part of the puzzle. Look into cottage cheese and flax seed oil. That is part of a protocol that is used for wasting. I don't have the link at hand right now but if I get a chance I will post it. If you are ready for it exercising with weights can help add muscle mass. As you said, the fact that this is even bothering you shows that you have made progress so congrats on that.
Hey Lizz,
I noticed on your signature line you were “mostly gluten-free”. If you are losing so much weight because of gut issues (Celiac) you have to be 100% gluten-free and it will take many months to heal your gut. The abx are hard enough on your gut without your body also attacking leaking food particles.
Don't know if it is the chicken or the egg, but so many of us have developed food allergies/sensitivities while being sick and they cannot be ignored.
Take care…..kim
p.s. I've also been able to rebuild some muscle now that I'm more active again.
Lizz,
sorry to hear you have such a problem, I had also this muscle weakness and could not straighten my body up, walked bend over. My body proba bly looked like yours. I have lost 65 lbs. I do look better and don't want to gain this weight again. I have not lost any weight since last August. Now I am doing lots better. Yes exercise is a must, I walk every day now and do some light weight lifting. I can lift about 15 lbs now were last year two lbs was too much. I am also gluten-free and the other day I read an article that if you eat gluten-free you have to add more protein to your diet. I have to look for it.
My walking is in the large super-store. Since I still have to use my cane, I take a shopping cart for a walk around the inside perimeter and do the walking.:roll-laugh:. Since the weather is either to cold or to hot here in Houston this is the only solution I have for walking.
I did start low dose Naltrexone (LDN) which I also think did a lot of help with the muscle strength returning. I hope you find a solution to your problem soon.
Eva:D
Eva Holloway
Parisa, thanks for the info, I did test dairy intolerant so I only use goat milk, goat yogurt and cheese. I probably can put flax seed into that.
Kim, I cut way back on gluten even though I had stool tests which did not show gluten intolerability. I also avoid starches. Just trying to cover all the bases. My next step with this new protocol is Neprinol, pricey, but I think necessary in my case. Glad to hear you got some muscle back!
Eva, I got a script for LDN which I will start slow as I'm weaning each week a little off the pred. I too like to lean on the cart at the store and I get more exercise that way. As soon as my right knee can bend more, I'm going to use my urban rebounder more for more exercise. It's great how you have recovered, now can lift so much more weight. Five years ago I had a trainer and was bench pressing quite alot of weight, but now, I think I'll start with just a five pound weight. You are such an inspiration!
Lizz,
When you say that you avoid starches, does that also mean all carbohydrates? Maybe more carbs would also help with the muscles.
Forgot to add that yes, you can add muscle. It just takes time and patience and working out can increase your herx. So take it slow.
Blessings!
eliParisa, I avoid nightshades and bread, gluten products in general. I use rice pasta. I've got to look in the archives for your bread recipe. Can you tell me where you bought the flour?
Eli, I'm hoping the LDN will help too. Thanks, and I hope you're doing well!
Lizz,
You certainly can get muscle back. At my worst, I was a little over 100lbs (at 5'6″), severe muscle wastage, and basically had the body of a 14 year old girl. It took me about 9 months to regain the weight, and I've been slowly adding weights back into my work out routine, as well as just started yoga and pilates. It's not going to come back as quickly as before, simply because my strength isn't nearly what it used to be. But, I did notice some muscle definition in my arms, as well as my legs coming back the last month or so. Keep working at it, and it will come:D
Maria
Parisa,
Is your husband still taking LDN? Its really helped my wife Kathryn with her DM, as she now walks for hours without any assistance of any kind. Message and physio has also helped alot too. She may start up with Yoga soon (slowly).
Jim
I was told a year ago this week, that my problem was FSH muscular dystrophy, and ignore the positive ANA scl-70 by my neurologist. He also told me all the nerves in my neck were dead, and to stop going to physical therapy because it wouldn't do me any good, and 'there is no treatment and no cure.'
Four months later, at my first visit, Dr.F. asked me what the neurologist was doing for my md, and I told him, “nothing. He said there is no treatment and no cure.” Both Dr. Neurologist and Dr. F definitely felt that the muscle issue was presenting like MD and not related to scleroderma. Dr. F seemed perturbed by my neurologist's non-help, and told me some of the supplements he recommended would help my nerve issue. Since then, he's added some additional supplements, including whey protein which I drink after I work out to help with muscle recovery. I kept going to physical therapy.
Today, Rachel, my p/t told me that the ligaments in my neck are strong, and that she can tell I'm not even thinking about it when she tells me to flex them. The muscles on the right side of my neck have recovered, and the left side has gained enough strength that I can — finally — hold the weight of my head forward over my chest instead of over my shoulders. It's been two years since I had that kind of muscle, or muscle control.
So much for having dead nerves in my neck, and never being able to use them again, and physical therapy not being effective, and wearing a philadelphia collar for the rest of my life 24/7, and being offered pain meds at my follow up visits. Someday, I'll cartwheel through that neurologist's office — and I'll post video of it.
Recovery has meant having a great doctor, outstanding physical therapist, proper diet, a boat load of the right supplements, and a diligent commitment to physical therapy. Prayer helps.
Heck, yeah, you can recover your muscle.
maria,
You're lucky to be able to do pilates and yoga — must be your youth! I went to a pilates business fourteen months ago, and they told me that they wouldn't allow me in unless I had a doctor's release. My muscles were so weak, and my posture so bizarre, they didn't want to have anything to do with me. Fortunately, they suggested the physical therapy team I presently have. It was the physical therapists who identified the atrophy in my neck and had me see a neurologist — who ultimately did the blood work that dx me.
I had to start out trying to work up to ten minutes on a reclining bike, and I did that for three months before I was ready to graduate to something tougher. It is a long road, but I'm getting there.
Well said Margaret! What a journey you've been on…I'm not so sure it's my youth (I'll be 40 in 2 months), and I haven't been able to do yoga or pilates since winter 2007. I remember trying to do it when I was really tight and bound down–not a good thing. I didn't want to damage tendons and ligaments so, I opted to walk instead of trying to do anything else. I have a great yoga/pilates dvd called “Yoga Core,” which is a fairly intense 1 hour workout, and I don't look pretty doing it but, no one can see me, and I laugh out loud at myself often. I'm NO WHERE near the flexibility I once had but, you have to start somewhere, and I'm determined to get that flexibility back over time. I'm too stubborn not to;)
I also find myself giggling at the gym when I'm bench pressing 20 lbs instead of the 100+ lbs I used to do just 2 years ago. The fact that I can even grasp a weight with my hands, or do a curl without feeling like my wrist is going to break is good enough for me. Just being able to be lifting and running at all is a blessing. Makes me feel somewhat normal again, and that is a fantastic feeling.
Keep up the good work–you will get there!
Maria
Thanks, Maria!
You made me laugh…I'm pressing twenty, too. It's a real joke compared to what I was doing in 2007… taking the back seat out of my Caravan and putting it back in when I was done, by myself. Oh, Humility is good for the soul! ha, ha..
We have the same stubborn streak. Don't tell me I can't do something, because I'll work until I can do it just to prove I can. I will get better.
It's so nice to share the victories with those who truly understand.
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