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I have a question about Fibromyalgia

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Posted 2/25/2014 6:26 PM (GMT 0)
Hi,

Here is my question, I understand that every person is different, and that pain works in different ways on different people, but when I hear that some people can do yoga, and take Advil and Tylenol, (while I am thrilled for them they don't need any stronger medicaiton) I also have to ask myself...how come I can't just manage my fibro with that???? Of course if I ask a doctor, they will tell me that I'm to overweight and if I lose weight, everything would be fine. I don't exercise, but I do walk around a lot now that I'm working. As I have read, but I don't go with the fact that Fibro isn't progressive, for me it is. When I was first dx'd it was my neck, sometimes my back an knees. Now it is that plus my finders, my toes and my hips. Ok yes it could also be that I am getting arthritis, but I can't help but wonder why some have Fibro so severe they require pain patches like me, or worse, and then others are mild. I have a hard time with the belief that some people handle pain better than others.

I'd like to hear some other thoughts on this please.

Posted 2/25/2014 6:46 PM (GMT 0)
Different people have different levels of pain, and some can tolerate it better. I have a high pain tolerance which means I can function under more pain than others can. So I don't need a strong medication as maybe you do. I always have pain, even with medication, but I live with it. Plus I want to stay on a lower pain med, so if the pain gets worse, there will be something stronger that I can take.

What kind of a pain patch to you use? Fentynal, or butrans? Or another??? Just curious...

I also have arthritis too and that makes for more pain. But if that gets bad, I take a celebrex.

I hope that you are feeling well...

Hugs, Karen...

PS Doing yoga and stretching help a lot for the muscles. I can't do it, I walk like you do...
Posted 2/25/2014 6:59 PM (GMT 0)
Karen,

It's the Fentynal patch. I know everyone is different, but if I am not on this, I am crying in bed rocking back and forth. Oh, it's still not pain free, I know that I'm going to always have a pain level of at least 2-3 sometimes worse, that I need break-thru medicaiton, sometimes not.

 

Posted 2/25/2014 9:23 PM (GMT 0)
Everyone experiences pain differently. Alongside that, people come from different backgrounds, situations, socio-cultural groups, and levels of fitness. We have different lifestyles, sleep habits, and eat differently. Others have overlying conditions. With so many differences, it is no wonder we have so many ways to treat!

Some work; Others do not. Children and no. Geographical location matters. So does level of fitness and sleep and diet.

But, bottom line, pain is different with each person. Comparisons are useless.

I am an exercise believer, lots of cardio and water aerobics. I also eat low-carb for IBD. I use tramadol during the day, and hydrocodone at night. I also take a muscle relaxer, or at least part of one, at night. I do not have children, live in the mid-atlantic, work, have IBD and arthritis, and my sister was diagnosed in the mid-90s with fibro. So I was educated about the condition early.
Posted 2/25/2014 10:46 PM (GMT 0)
I have a high pain tolerance myself. If I focus on my pain it seems to be overwhelming at times. I try to solve all mine naturally before reaching for painkillers.
I can't stretch much, but I do try to walk when I can. I do have mild arthritis in my back and knees.
Posted 2/26/2014 6:17 AM (GMT 0)
hopegirl,

I HAVE WONDERED THIS TOO MYSELF! Because I've had fibro for nearly 8 years now and others who say that they, too, have fibro (like a couple women at my prior job, etc.), claim that they feel OK once they take like 3 or 4 tylenol or aleve!!!! They are fine then to go on with their day and even work a physical job (it's such a physical job that I had to quit-- it was taking a toll on my health and I left everyday crying my eyes out it hurt so badly). But these women act like it's nothing!!

All along as they're talking I'm just thinking to myself, "how could it be that they have the SAME condition as I do, when that's all that they need, and here I am, nothing ever touches the pain and my entire life revolves around how severe and constant and disabling my pain is 24/7, head to toe and everywhere in between?! I've had a constant headache for 5 yrs that hasn't gone away! It's all I can think about. And these ladies seem just fine!" < That's everything going through my mind when they describe how well they can function!!!

But I do AGREE with what everyone replied to you here- everyone certainly IS very very very different! That's really all it is. It makes sense. (Plus, in my case, it is quite possible that I have other undiagnosed conditions that are also aggravating the pain, so who knows if there is *more* to my very severe, constant state of pain).

Not to mention, everyone's situations and circumstances in life are different. I think stress can play a part in how bad some people are/ get, just the same as any chronic condition can. I think in my case, I have much more daily stress and "bad luck" than the average person does, and I don't doubt for a second that it worsens my muscle tension and makes everything that much worse, etc. Not only are everyone's bodies' different-- everyone's life situations and stress levels are ALSO very different.

I'm sorry to see that you, too, are struggling so much... Hugs.

Eden :-)
Posted 2/26/2014 7:15 PM (GMT 0)
Hopegirl, I am one who has managed on ibuprofen and Tylenol but my pain levels have been generally a 3-4 at best. I have had times where the pain is off the charts.

I did have excessive pain a few years ago, found out I had another illness along with fibro, and was given a muscle relaxer and that has made such a difference in my pain levels now. I still maintain around a 3-4 on the charts but I'm also not taking as much ibuprofen and Tylenol either. When I get flares I am much higher but I can deal with it because I know the flares will get better. I use every "trick" in the book to help myself at that time. I did try Vicodin and Tramadol at one time and neither of them touched my pain.

So, even though you read that some use over the counter things, it doesn't really mean we are nearly pain-free. I'm just not willing to take the other medications and I've learned how to handle the pain to make myself more comfortable.

Yes, we are all so different. I always have had a higher tolerance to pain but fibro has brought me to my knees many times over the years. But I am still able to live my life fully when not in a flare.

Have you tried less strong medications? One of our members has said many times that once she weaned off narcotic medications and started using over the counter meds and supplements, she has done far better. Did you know that narcotics can cause more pain after a while? I heard that recently! So that might be an option for you. Have you tried magnesium malate and vitamin D3? These have helped quite a few members. There are links about these in Fibro 101 and how they work in the body.

I do hope you get better control of your pain. No one should have to deal with that much suffering. Try things. You never know what will help you...even walking.

Sherrine
Posted 2/26/2014 8:25 PM (GMT 0)
Hopegirl,

As to your weight being the answer, I say hooey - I've only gotten thinner in the almost 30 years I've had Fibro....someone actually said to me at church the other day, "You're SKInny - I'm sorry, but you are!" (YES, I KNOW! And by the way, how kind of you to point it out to me yet AGAIN!!)  mad  

I mean, sure, we all know that excess weight can contribute to a whole host of problems, but it's not the only culprit. For instance, I have a fatty liver. No one has explained that one to me....I'm a vegetarian who drinks zero alcohol.

I don't believe some people handle pain better than others....maybe initially, but chronic pain by its very nature wears you down, and all Fibromites have had to learn to live with some level of it. It's just a matter of how we get it to that tolerable level, and that's where the difference comes in. As Myself said, we each have a unique conglomeration of internal and external factors, which we have to navigate.

Most of my severe pain is along the Sciatic Nerve on my left side - lots of nerve damage there...and I have several lower-lumbar discs that are in bad shape.  That's what I need narcotics for. Before that, I got by with a low dose of Tramadol, plus the stuff I take for sleep. Ah well, such is life.

Don't feel bad, you're doing what you can, and that's all any of us can do.

Debbie
Posted 2/28/2014 5:02 AM (GMT 0)
Many doctors automatically blame it on weight, which I agree that excess weight certainly can cause a wide range of problems... but, I've been told that I have one the "worst" cases of Fibro seen (although now they think it's because I have other undiagnosed issues on top of it), and I'm not heavy by any means. I was 115 pounds when I started having severe pain problems, and within the past few years always maintained a weight around 125. I am now a little more, around 140ish... but not big by any means. And my pain is still always off-the-charts debilitating. Bigger people can suffer with pain, and so can middle-sized people and smaller people. Don't always take the weight/ pain theory to heart too much-- as long as you're trying to take care of yourself, you're doing the best you can.

I would also like to add (acheybody reminded me) that although fibromyalgia can certainly vary in intensity for each individual (just the same as any chronic illness can range from mild to moderate to severe), you must also take into account that rarely do people have fibromyalgia as their only health problem. Other things may contribute to the much more severe cases (I'm not saying that's your case-- I don't know what all is going on with you), but speaking from my case, similar to acheybody with her nerve damage & lower-lumbar issues, I recently found out that I have SEVERELY misaligned vertebrae in my neck. Well, that certainly may account for A LOT of my *extra* disabling pain (plus, the ongoing headache I've had for about 5 yrs that has never once gone away).

(Actually, once I was adjusted just once at the chiropractor yesterday, ALL of my leg pain went away-- at least for yesterday and today it's been practically non-existent-- besides my one knee acting up a bit today! Prior to that, my leg pain was constant and SEVERE).

Point being, there is often [but not always] more to the story.

Eden :-)
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