I have not had much success with any of those therapies but Plaquenil helped a lot when I could take it. But it was 6-8 weeks before it kicked in. I also took Medrol at first and that helped tremendously but I also was pleased with the NSAIDs and my response to those when I could take those. I still take Medrol, at 2 mg a day. I has its own set of issues but it really is all I can take now. Good luck.
Mary Ann

Thank you for your input Mary Ann! It's much appreciated. I'm also seeing a lot on "clean eating". There is so much overwhelming information out there!

You all sound so positive. How do you do that. I've slipped way below that to hopelessness just wishing it would finish the job it started. 3 or 4 years ago I could have been there but not now. I used to have a job I loved and plenty of what I thought were friends who don't seem to want to be around me anymore. How do you do it.

@ Stephen: Why do we all sound so positive? Probably the answer is a little different for each of us.

It might be-- possibly-- the mescaline. You have to search the threads carefully to find it, but actually, every single one of us has been eating three to five peyote buttons a day...

For me, it was working through the rage you are feeling right now. Realizing that I hated this disease, I was never much of a bar or street fighter, but I have a very aggressive side and I wanted to drive this cowardly, filthy maggot of a disease back under the rock it crawled out of. For as long as I can, anyway.

I stopped drinking, I stopped smoking tobacco and weed. This spring, I can barely work out, but I still try.

@ Cap -- I do not think muscle relaxers help. Flexeril is the worst-- just makes the exhaustion unbearable.

For exercise, move from one muscle group to another. Now that things are getting bad, I'll walk ten minutes straight uphill with the dogs, do seven minutes on the strider as hard as I can blasting punk rock in my headphones, and then swim for seven minutes, usually treading water without using my feet. So I work lower body for ten, core for seven, upper body for seven.

I don't count walking around as exercise, but I make sure I do that, too.

Sucks that's all I can do right now. Hoping for a drop in symptoms over the summer so that I can get on my body board. Pissed I missed the ski season, and could barely ride the mountain bike this winter. (Can't now.)

Hip and shoulder pain may be worse with immobility. If I skip to many exercise days, my sciatica gets bad. Try it both ways, see which is better. The pain may be bad, and you may need to crash for a half hour, but you might get more limber the rest of the day. It's so hard to know. Be careful, start slow. When you're having a good day, you'll know it, and you can go a little harder.

Thank you @Catalyzt!

Sounds like you are doing a lot! I've had a rough week. My back was terrible this week. I am fortunate and have a muscle simulator similar, yet smaller like they use at the chiropractor. I got it last year when I thought my back pain was well, just back pain. You mentioned sciatica which also was mixed in with the back pain. Sunday & Monday - was down for the count - Tuesday - bounced back and actually felt good for once! You just never know when I good day will sneak in there.

Today I'm hoarse and can hardly swallow. Just keeping my fingers crossed on this Plaquenil to kick in. I used to do 2 miles on the treadmill, now my feet just can't take it. Sounds like are very active! That's encouraging!

@Stephen - I'm sorry you're having a bad day, or bad, however long it's been. It's def not easy putting it lightly! How long have you been diagnosed?

My exercise level has changed a lot. When this started, I was doing 2.5 to 3 miles daily at a 15-16 min mile on Tennessee hills. I can walk around the block now, about a mile in 20-25 min. Mainly, I do a water exercise class with a bunch of old women with back problems and arthritis. I fit right in! LOL!
I have a pretty arthritic back, a bad shoulder and an arthritic knee that all get pretty painful at times. I find that moving around is sooo much better than lying around. If I am chair or bed bound for a day or more, the pain is unbearable and will take a week or so to get back to a better level. Sometimes, I overdo it and then I also pay. I take no pain meds but an occasional Tylenol or 2, but a few days ago got it all riled up working in the garden and took 2 ibuprophen. NSAIDs are great. If I could take them every day, I would. Since I quit taking stuff every day, I find that what I do take works much better and you do get used to some of the pain day to day.
I say, just enjoy what you have. None of us is getting out of here alive so do what you enjoy, that you still can do. I cannot kayak anymore. I can only do short hikes and on easy trails with fairly level ground. All day at an amusement park is hell and so is long shopping trips and long drives. I love the beach but cant do the sun at all. But, I am driving 8 hours to see my son for his birthday. I hope to go to the beach this summer with my kids even though I will probably be in the house most of the time. I kayak on the lake with no current for short times and yesterday, I shopped with friends for 2 hours. Not all day, but enough to get the thirst quenched. I quit work but do volunteer nursing that I can do, like taking blood pressures for health fairs and for the Lions Club glasses and eye exam clinic. I do triage for Remote Area Medical (Cat- they come out to L.A. You might enjoy looking up that web site.) I go into the Appalachian Mountains with a medical van 2x a month and run a clothing closet. Once a month, I work with a group that makes charity quilts. Most of this requires me to sit and talk to folks, direct others, hang a few clothes and listen. It is great socialization and if I am too sick to be there, they can cut my pay! LOL!
It took awhile to get where I am now, and my disease seems to not be as bad as some although I do take about 20 pills a day.
I wish all of you luck with this disease. Nobody but us knows what we go through every day and if my wand would cure us all, I would spend the rest of my life waving it day and night!
Mary Ann

Hi Cap,

I've tried yoga and doing exercise at home on my own but couldn't continue due to feeling such pain afterward. A doctor referred me to aquatic physical therapy and it was the first time I was able to keep exercising. You could ask your doctor if this exists anywhere near where you live. The pool where I go is indoors (so no sun exposure to worry about), heated and salt water, which is wonderfully buoyant. I hope you can find something that works for you.

Light massage helps sometimes as well as the occasional Skelaxin.

Yes, Reynauds sucks!

Thank you Mary Ann and alwezonmy! Funny the mention of water exercise! I made jokes about it recently, but after still trying to keep up the traditional way, I think I really may give it a try! I hurt my back recently and was down a few days. It's painful to exercise and I found out, also painful when you don't! I am 4 weeks on the Planquil, I think I am starting to notice some improvement! Thanks to all of your responses.
At least this journey has others who can relate!

Hello--
I have recently started going to get acupuncture & massage therapy. I am getting some relief, although temporary I think these are very beneficial. I am going to try a water aerobics class this summer because I've been told this will help where I am unable to exercise & walk for long distances as I previously have before diagnoses. I'll let you know how it goes, but I am honestly happy with the acupuncture & the massage therapy. I must note that I had to do my homework & ask around to try & find the right people to provide these services. Every place that does acupuncture & massages are not necessarily the right fit. My acupuncture treatments are actually done by a doctor & after trial & error, I have a knowledgable massage therapist that understands I have multiple chronic health issues & communicates well with me. Good Luck!

I have a question does anyone feel tingling under there skin. I have MCTD and I have been taking Plaquenil for a month. I am also new here
Thank You
Michelle

speechteacher1 - Thanks for the input on acupuncture! Def worth considering. I'm looking into massage therapy for sure.

michelle7140 I have that tingling as in hands and feet fall asleep easily, but not a constant feeling.

I haven't had any luck with any of those therapies. I spent so much money on a chiropractor and a massage therapist to try and get relief but it only seemed to make it worse. I haven't had to strength and energy to go to the gym but I miss it so much. I tried two different muscle relaxers and they didn't help at all. The only med that has helped so far is the prednisone. I'm still waiting to see if the Plaquenil and Methotrexate are working. Hope this helps!