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Does This Sound Like Fibro To You?

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Posted 11/2/2013 8:02 PM (GMT 0)
Hi, this is my first time posting here. As a little background I'm 38 and I suffer from low grade depression and a mystery illness as of 5 years ago. I have myofacial pain in most of my muscles due to the sedentary lifestyle I've had to adopt as a result of my illness.

So I will describe my symptoms and hopefully some of you nice people can chime in tell me if this sounds similar to what you experience or if you have any insights for me.

Basically if I walk say 5 blocks I'm ok but say I walk 15 blocks then I can trigger a flare up. A flare up for me usually comes one or two days after I did my exertion. Exertion is actually no problem for me, it's the post-exertional flare up that gives me trouble. The more I exert myself the stronger my flare up will be. So what I experience is burning, tingling throughout my arms and legs (same on both sides) for a few days post exertion along with bad fatigue. I spend most of that time in bed because I am too sore and too tired to do much else.

Does this post-exertional reaction sound similar to anyone? Anyone else with burning/tingling arms and legs?
Posted 11/2/2013 8:28 PM (GMT 0)
Hi, and welcome! I find if I'm consistent with my exercise, I have no problems. I walk daily. When I started out, I could only go four houses down and had to turn around and head back home. But I didn't quit. I went out the next day and was better. Mthen I added more distance and now I can walk with ease but I do this every day. If I did an exercise and increased it in leaps and bounds, I would be in a flare. If I overdo using my muscles...muscles that aren't used to the exercise...I pay for it. So being consistent is a key for me.

Are you taking vitamin D3 and magnesium? I use magnesium malate and these help with muscle pain. Many are deficient in these. Mthere is a link a out them in Fibro 101 and how they work in the body.

Be sure to read Fibro 101... The first thread on the forum. Mthere are links to goodminfor about fibro and you will learn a lot there. Good starting links are Symproms and A Thorough Explanation of Fibromyalgia. You just might see yourself there.

I'm looking forward to getting to know you better. Don't hesitate toast questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 11/2/2013 8:29 PM (GMT 0)
Hi 777KAM777
Nice you stopped by.

Your symptoms point to chronic fatigue (CFS/ME) but could also be related to fibromyalgia. Post-exertional collapse is a hallmark of CFS. I had it severely for many years.

You might want to post at the chronic fatigue forum as well and compare notes.

Of course, other illnesses could cause those symptoms, too, so getting checked out by a doctor if you haven't already been would be a good thing to do.
Posted 11/2/2013 8:44 PM (GMT 0)
Ty for your reply Sherrine. The funny thing with me is that I could probably walk across town no problem (assuming I'm not fatigued to start out) it's the after effects that really get me. Yes I do take Vit D and magnesium. I will read the intro to fibro as you suggested.

Hello Marrit, yes I definitely seem to operate with a very low energy reserve most of the time. I remember a couple of weeks ago I tried doing a few pushups and I was very tired the next couple of days. I will certainly do some more research on CFS although I don't think that's the whole problem.

Yes I have been to some neuros and a rheumatogist. The neuros all but ruled out a myopathy which is what I was convinced I had at first due to a high CK reading and my aversion to exercise but it was a dead end. I asked my rheumy to test me for ANA and a few other things which came back negative. I still have some more blood work to do though. I had MRI of my spine which was fine as well.
Posted 11/2/2013 9:39 PM (GMT 0)
I can do that, too. A couple of years ago I layed 99 bags of mulch. I could do it but I paid a price afterwards. Pacing yourself really helps.

Sherrine
Posted 11/4/2013 2:14 AM (GMT 0)
I can definitely relate to this. For example, even low impact exercises on the Wii can cause me to be very sore but I don't feel it until the following day - often times its worse the 2nd day after I work out. I will be so sore I can hardly move for three to four days afterwards even if I didn't feel like I was exercising much. I really have to watch it because I don't know if I have overdone it until the next day!

I walk daily, but if I walk too fast or for too long, I will have a lot of burning in my legs.

I hope that makes sense and I hope it helps!

Kay
Posted 11/4/2013 5:18 AM (GMT 0)
Hi, Kam. Welcome.

Yep yep, me too! Yesterday I did a really stupid thing - I shopped till I dropped. Had the day to myself, no family around, (they went to the mts. and took the dogs) so I had no need to hurry home and "do" for anyone.

I had a lot of fun, wandering around looking for treasures and bargains, taking my time. Except for a short break in the car to eat my lunch, I was on my feet for 4 & 1/2 hours!! I was shocked when I realized that. Felt fine at the time.

Today, my whole left side - it's always my left side - is pretty sore. I can't touch anything without significant pain. But I wouldn't be surprised if it's even worse tomorrow. That's how it usually goes.

I did take a short walk today, though, because it's important to keep moving some; otherwise, the pain will end up being even worse. Too much bed rest really isn't good for Fibromites, in the long run...stiffness sets in easily. I know it's hard to believe when you're going through it...

I hope you'll keep posting - we are here for support.

Debbie
Posted 11/4/2013 3:07 PM (GMT 0)

GrandmaKay said...
I can definitely relate to this. For example, even low impact exercises on the Wii can cause me to be very sore but I don't feel it until the following day - often times its worse the 2nd day after I work out. I will be so sore I can hardly move for three to four days afterwards even if I didn't feel like I was exercising much. I really have to watch it because I don't know if I have overdone it until the next day!

I walk daily, but if I walk too fast or for too long, I will have a lot of burning in my legs.

I hope that makes sense and I hope it helps!

Kay

Hi Kay, thx for writing. Ya it seems like we experience very similar reactions. I really wonder if this would fall under fibro.

During those 3 or 4 days do you experience very low energy at any point, or is it just the pain that sidelines you?

Has your Dr said anything about the burning?
Posted 11/5/2013 5:31 PM (GMT 0)
Hi. Yes, my energy level is very low at that time. I'm not sure if it might be because of the weariness of being in so much pain every time I move or if it's a different kind of fatigue.

The doctors haven't really said anything about the burning in my legs - they have just run many tests which have all been inconclusive. A rheumatologist diagnosed fibro when he put slight pressure on certain points on my body and it hurt.

I have found supplements to be very helpful. I take a high quality multivitamin/multimineral daily as well as high quality fish oil and probiotics, Vitamin D, magnesium and Vitamin C. All supplements are NOT created equal. The quality makes a HUGE difference.

Acheybody mentioned that it is important to keep moving and I couldn't agree more. Being too idle can be just as bad as too much activity for me. You just have to learn what your limits are and take very small baby steps (that's what the rheumatologist told me). He recommended some kind of water exercises or low impact exercises such as Yoga, and he suggested I increase by very very small increments at a time (like an extra minute added every week). I didn't listen and I regretted it!

I'm just newly diagnosed and still have a lot to learn, but this has been my experience. I hope you find some answers and some relief soon!
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