Anyone else with Fibromyalgia or other AI issues?

[wideeyed]

I made the decision to go Paleo and work on fitness because I finally, after 15 years, got a diagnosis.  But I am really, really frustrated most of the time by the limitations imposed on me by the condition.  I could use some accountabilibuddies who are experiencing similar issues and can kick my ass off the pity pot when I get stuck.  For me, this is mostly about managing a health condition so that I can function at my optimum. I'd love to meet others who are working toward the same goals.

 

Marge

[Duality]

My ex had a bad case, she's 23 now, but she got diagnosed probably like 2-3 years ago (she said it started being like that when she was 12). I know how it can be coping with it, I've spent countless night up with her because of it.

 

I recently talked to her and she said that since she started exercising, it helped a lot. She eats right and exercises and the symptons have been less severe.

 

Recently one of her friends posted on her wall this http://guardianlv.com/2013/06/fibromyalgia-mystery-finally-solved/.

 

It might be a good read, it's not all that long.

 

The worst in all of it is that she had been bullied all through high school and had major, really major emotional and confidence issues (which is what led us to go our seperate ways). Also her mother kept telling her it was all in her head and to go walk it off. It amplified everything so much.

 

I know what you're going through and it's not easy. But with a good helping hand and good support, it's that much easier.

 

If ever you need to talk to someone about anything, I'll be there. I can give you a swift kick in the butt when you need it. (As I'll need the same also, because I procastinate a bit too much).

[wideeyed]

Thanks.  Yes - it sucks   But it isn't going to kill me, and it's manageable.  I just get incredibly frustrated by all that I cannot do.  Then, of course, I go out and do something I THINK I should be able to do, and get sick, or start a flare up.  Thanks for the support.  And with what you just shared about your ex, I'm guessing that my comment on your other thread is probably pretty accurate in her case.  Low sex-drive is definitely part of the problem, and it has nothing to do with whether I find my husband physically attractive or not.  We've had to have quite frank discussions so that my physical issues don't become his emotional ones.

[Duality]

Thanks.  Yes - it sucks   But it isn't going to kill me, and it's manageable.  I just get incredibly frustrated by all that I cannot do.  Then, of course, I go out and do something I THINK I should be able to do, and get sick, or start a flare up.  Thanks for the support.  And with what you just shared about your ex, I'm guessing that my comment on your other thread is probably pretty accurate in her case.  Low sex-drive is definitely part of the problem, and it has nothing to do with whether I find my husband physically attractive or not.  We've had to have quite frank discussions so that my physical issues don't become his emotional ones.

 

Yup, it was a great part in it.

[Dee Light]

I'm not diagnosed, but I have a family history of RA and lupus. About two years ago, I started experiencing symptoms of what I still believe could be lupus, but my blood work came back with a positive ANA and not much else. So I don't meet the criteria, but I can still relate. I know how tricky it is to find a balance between physical activities that are good for your body and those that could potentially trigger a flare up. What's your exercise regimen like?

[wideeyed]

Right now, my goal is to just walk.  I am trying to work myself up to the point where I can give the dogs two GOOD half hour walks a day (2 miles each).  Since they are learning how to walk with manners, this is working okay, because we have to slow down and train as we are going.  But even THAT is proving to be too much - I can do ONE walk right now, because if I do the long walk in the evening, I hurt to much to do it in the morning.  I had hoped to start the beginner's bodyweight workout next week, and I think I WILL try to do a circuit, but my knees are creaking, and hurting, and I'm worried about the squats and lunges.  I will try, though, and if I can't do those, I'll do the upper body work and figure out some lower body stuff that doesn't impact my knees quite so much.

 

I'm not sure it's fibro either - but my ANA and other stuff comes back looking fine, as does thyroid work. 

 

On top of it, even with strict Paleo, I have had two of the most ass-kicking migraines I've had in a LONG time in the last two weeks.  So today was an enforced rest day, because I was up half the night sick

 

I know that 80% of weight loss is about the diet.  I am being REALLY, REALLY good about that - getting rid of processed foods, grains, chemicals.  I am hoping that as the weight comes off, the pressure on my knees will let up, and I will be able to increase my exercise.  If I can find a reliable sitter, I might look into joining the Y so I can work out in the pool. 

[Dee Light]

Walking is a good start and it sounds like you're doing great with one 2 mile walk (that's actually a lot of walking in my book.) It's helpful to see fitness as a tortoise vs. hare situation when it comes to AI disorders. Slow and steady wins the race 

 

Migraines are my kryptonite, sorry you've been dealing with 2 of them for so long. Do you take any medication for them? I was on Epidrin for a while during college, but it made me extremely drowsy. Kind of a lose-lose situation.

 

Weight loss should alleviate some of the pressure on your knees. My mom has RA and is trying to lose weight to help with her joint pain as well. She's been doing a circuit/boot camp style program and so far, so good. I've heard that any low-impact exercises, like swimming and yoga, are good for people with AI disorders.

 

Aside from the migraines kicking in, have you noticed any improvements in pain since changing your diet? I have a very finicky digestive system and any change to my diet seems to cause a problem, but I know I could be doing a lot better in that area.

[wideeyed]

Actually, GI stuff seems better.  There are some raw greens I just cannot eat, and I do better with cooked vegetables, but I haven't really had GI problems since I started.  Considering what I WAS eating before I started, that's not really a surprise

 

Yes, there is less general pain.  The pain is now directly related to activity.  Which means I am overdoing it.  I'm going to cut back to a mile 2x a day and see how I do with that to start. 

 

Let's see, migraine meds:  I take topomax daily (to prevent them), I take a prescription triptan (Maxalt) when I get one, with 4 Aleve.  Last night it was sudden onset, so I used a nasal spray NSAID, toradol, instead of the Aleve.  If all that doesn't work, I add vicodin to the mix.  I rarely get ones that last longer than four hours - and it's pushing on 24 now.  I might go to the ER tonight, because I can't take any more of the triptans, and I can really eat.  This is really unusual even for me.  I've had them since I was a kid, but when menopause started they got WAY worse.  Everything did   Hopefully once my hormones settle down the rest of this will too.

[Vintage]

I have RA. Fortunately, my body has responded very well to exercise, cleaning up my diet and losing weight. About 6 months after my diagnosis I started working out in a small group at a crossfit box twice/week. We started slowly and took most of the impact out at first (I did low step ups, not box jumps, and rowed or used the stationary bike instead of running and jump roping, etc.) I very slowly added in some of the impact activities and eventually increased to 3x/week. Now I'm in regular crossfit classes 3x/week and my coach assigns me 2 extra workouts to do at home or at the local track each week. I think that strengthening my joints has helped me immensely, particularly in my ankles, knees, hips and back. I've lost 50 lbs so far and I know that helped a ton. Weight loss and a cleaner diet seem to have helped even out my hormones, which makes everything feel better. 

 

But I still have days it just isn't working. Sometimes I get midway into a workout and have to modify it because my hands or feet are killing me. Sometimes I have to take an extra rest day. It frustrates me to no end (at one point, the pain and frustration brought me to tears which terrified the male crossfit coach). I've had a lot of fear-thoughts about my disease progressing lately. I'm having to remind myself often that this isn't the end of the world. It is what it is and I'll deal with it as it comes. 

[cerulean]

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