Can't Keep Up

[Tibro1029]

Does anyone else look at your non-fibro partner when you are exercising, and they are going 3 times the speed of you (elliptical), and really nailing it, and you are feeling like your going to pass out or throw up all the while barely keeping up? With twinges in your back, or your neck, or your ankle, or your knees... I'm really trying to not hate myself or my body. I've been through so much trauma in the past so it's already hard for me to not have insecurities, and feelings of failure, but exercising with my wonderful and understanding husband sometimes makes me feel worse about how my body just can't keep up.

Also, does anyone else have dreams where your body is failing you? I've had this reoccurring dream for the last where my knees keep giving out. I'll be walking with a group of friends, and they just keep giving out and I fall to the floor. Sometimes people help, and I apologize a million times, and sometimes no one even looks at me, and I have to pull myself across the floor. Just curious if these are stress dreams, or if anyone else has experienced this?

This was really just a rant. Just wanted to know if anyone has felt the same.

Oh and new to this community. Had back pain since I was 9, with no doctor being able to tell me what was wrong. Throughout my 20s and 30s, my pain got worse, and added in stomach issues, chronic fatigue, and all sorts of other issues. Saw many doctors for about 3 years to rule out everything else possible that could be wrong with me, and finally got diagnosed last year. Happy to be here with you guys.. aka.. the only people who could actually understand.

TiBro

 

[JayCS]

Hi TiBro, and welcome!
Well, what about usually whilst not being able to exercise at all (a 4'(-7') workout on best days), not being able to go for a walk with my wife, I cycle next to her. On good days I've tried to leave the bike at home, and she's quickly way ahead, I'm slower and I need lots of breaks, and even then my overall severe Ache comes up quickly. Same with cycle when I do get off in between, I then have to catch up after.
But as I have no "stamina", but a limited length of "strength", if we do/did a short 7' workout together, I can/could do the exercises faster, harder and many more repetitions than her. Not many days I'm able to, but if I have energy (from cortisol/histamine).
I have had failing dreams too, I think that's completely natural.

I think both experiences comes from still wanting to compare to how it used to be and to those around me, from feeling in competition. (So if you'd asked that: that would be the way out. It's always unfair to compare .... with someone who's "ill". Whether to others or to me. It's decent/virtuous to not let them feel they are "a failure", because they are not. We need to be allowed a big bonus, the other person 'a handicap' - after all, this is real, isn't it?).

 

[Tibro1029]

Thank you for your message. Yes, my therapist said the same thing. "It's not a competition" and certainly not with someone who has an active job and skateboards. I've been dealing with some bad depression since last October, so lately, I have felt lazy and like I'm a failure in most areas. Add in constant pain, the stomach issues, allergies, and horrible fatigue, and I just feel like it's always something and I can't keep up. I'm really trying hard to take it day by day and start getting in contact with more people that deal with this so I don't feel so alone. It can feel very isolating. Thanks again for the comment and glad I'm not the only one with the falling dreams.

 

[BlueBells]

Thank you for your message. Yes, my therapist said the same thing. "It's not a competition" and certainly not with someone who has an active job and skateboards. I've been dealing with some bad depression since last October, so lately, I have felt lazy and like I'm a failure in most areas. Add in constant pain, the stomach issues, allergies, and horrible fatigue, and I just feel like it's always something and I can't keep up. I'm really trying hard to take it day by day and start getting in contact with more people that deal with this so I don't feel so alone. It can feel very isolating. Thanks again for the comment and glad I'm not the only one with the falling dreams.

Hi TiBro, I've only just joined as well, have searched for so long, finally found a genuine site to chat on.
Still learning how to navigate, I've figured out how to put country and state up. ( I feel that's an achievement when head is mashed spuds )

The amazing feeling of relief, acceptance, it's a good feeling to be around others who "get it", isn't it? Mind you, I still feel a bit fake, as I don't have the pain everyone mentions, it's only rare and moves around. That's what I was clinically diagnosed on.

 

[Pks3]

Hi, I’m new to the site as well. In the past diagnosed with lupus and now they say it was probably not lupus but is definitely rheumatoid arthritis and possibly fibromyalgia. The RA had to be diagnosed with x-rays and MRI since my blood shows none of the markers. My RA doc says RA and fibromyalgia are treated the same so it’s not necessary to do any more testing, just assume I have it. Seems the joint pain is the RA. I also have what I call “heavy days” when I wake up and feel like each limb is 600 lbs and ache all over down to the bone. With meds, this has improved to only 2-3 days a month. I also sometimes get the weird walking gait you have mentioned here. It‘s not really painful, it feels like my legs just aren’t responding. I’ve also got shortness of breath that has been getting worse for the past year. Cardiac work up was normal and now waiting to see a pulmonologist to see if there is something in my lungs causing it, medication, whatever. Like JayCS, I can ride my bike (I did get an ebike so if I feel fatigued I can bump it up and still get home) and feel good but walking or throwing a ball for my dog, etc. I get SOB quickly. Dog walks are about 2.5 miles at a slow pace and I need to stop 2-6 times to catch my breath. I don’t have to stop long but still I feel ridiculous. Glad to have found this site for inspiration and information.
Does this ever get better?

 

[BlueBells]

Hi @Pks3

First up, not sure that it 'gets better', but simply being around others that actually understand from experience, rather than text books, I have found, for myself, makes a massive difference.

Can I please suggest, putting a few paragraphs in makes it much easier to read. I, for one, get a bit overwhelmed, and sometimes have to give up reading, or make several attempts.

Please feel very welcome here, the people are very friendly and supportive.

Hugs ( love the little dragonised gremlin )

 

[sunkacola]

Does this ever get better?

Hi there, and welcome to the forum.

It can get better. As with most things, there is no guarantee that it will get better (or that it will get worse), but there are a lot of things you can do to experiment and find out what helps you.

I know it can get better because it has, for me. Years ago I was dependent on opiate medication to get out of bed and through the day and was in so much pain that I didn't get anything done, and was depressed all of the time because I was not living what I would call a life. Through my own experimentation, which I did very methodically, and which took about 2 years of steady attention, I learned what things I could do that help me and what to avoid. And I learned how to adjust and go with what each day presents to me.
The result is.....I still have fibromyalgia. BUT, it is much easier for me to manage these days and I am living a life that I have been able to adapt to and accept. I have good days and not so good days, but the really bad days are much less frequent. So, I would call that, in comparison to where I was years ago, BETTER.

You can do it too. Results vary. But if you can accept what is happening each day and not fight it, and do your experimenting with a positive attitude that something will get better as a result, I believe you have a very good chance of finding yourself in a better place with this in time.

Here are some ideas to get you started.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

I hope that this forum will be helpful to you. Ask any questions you want; we're here to support one another.

 

[kathybird]

Hi there, and welcome to the forum.

It can get better. As with most things, there is no guarantee that it will get better (or that it will get worse), but there are a lot of things you can do to experiment and find out what helps you.

I know it can get better because it has, for me. Years ago I was dependent on opiate medication to get out of bed and through the day and was in so much pain that I didn't get anything done, and was depressed all of the time because I was not living what I would call a life. Through my own experimentation, which I did very methodically, and which took about 2 years of steady attention, I learned what things I could do that help me and what to avoid. And I learned how to adjust and go with what each day presents to me.
The result is.....I still have fibromyalgia. BUT, it is much easier for me to manage these days and I am living a life that I have been able to adapt to and accept. I have good days and not so good days, but the really bad days are much less frequent. So, I would call that, in comparison to where I was years ago, BETTER.

You can do it too. Results vary. But if you can accept what is happening each day and not fight it, and do your experimenting with a positive attitude that something will get better as a result, I believe you have a very good chance of finding yourself in a better place with this in time.

Here are some ideas to get you started.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

I hope that this forum will be helpful to you. Ask any questions you want; we're here to support one another.

I was diagnosed with fibro when I was 25 and I am now 65. In my experience, it can get better, but can “come ad go” over the years, months or days. I am going through a season now where I have lots of joint pain, no energy, and anxiety. I take Elavil for sleep and Clinopin for the anxiety. I am trying different supplements to help with the joint pain. I have had times that I didn’t notice the fibro symptoms at all. I’m not sure others have felt the same.

 

[sunkacola]

I was diagnosed with fibro when I was 25 and I am now 65. In my experience, it can get better, but can “come ad go” over the years, months or days. I am going through a season now where I have lots of joint pain, no energy, and anxiety. I take Elavil for sleep and Clinopin for the anxiety. I am trying different supplements to help with the joint pain. I have had times that I didn’t notice the fibro symptoms at all. I’m not sure others have felt the same.

Hi kathybird. It's unusual for anyone to have been diagnosed that long ago, since fibromyalgia was only described as a condition that could be diagnosed in the mid-1980s. Don't know if that makes you feel lucky, but at least you didn't go through years of having doctors tell you that you were making it up. (Or did you, anyway?)

I think most people with fibro....or so I have gathered...feel it worse at some times and better at other times, regardless of triggers, although being aware of what triggers the pain specifically for you can reduce the frequency of those worse times. I know it's that way for me. Sometimes I will wake up with a lot of pain and there is no precipitating factor I can point to, but I also sometimes (not all that often) wake up feeling good, equally with no discernable reason to have have caused it.

 

[kathybird]

I was diagnosed with fibro when I was 25 and I am now 65. In my experience, it can get better, but can “come ad go” over the years, months or days. I am going through a season now where I have lots of joint pain, no energy, and anxiety. I take Elavil for sleep and Clinopin for the anxiety. I am trying different supplements to help with the joint pain. I have had times that I didn’t notice the fibro symptoms at all. I’m not sure others have felt the same.

Hi kathybird. It's unusual for anyone to have been diagnosed that long ago, since fibromyalgia was only described as a condition that could be diagnosed in the mid-1980s. Don't know if that makes you feel lucky, but at least you didn't go through years of having doctors tell you that you were making it up. (Or did you, anyway?)

I think most people with fibro....or so I have gathered...feel it worse at some times and better at other times, regardless of triggers, although being aware of what triggers the pain specifically for you can reduce the frequency of those worse times. I know it's that way for me. Sometimes I will wake up with a lot of pain and there is no precipitating factor I can point to, but I also sometimes (not all that often) wake up feeling good, equally with no discernable reason to have have caused it.

I might have been a little older. I can’t rememberAfter seeing many doctors. I went to a rheumatologist, who had to get a book out to see where the tender points were! He was wonderful! I pretty much just self manage it after all these years!

 

[sunkacola]

I might have been a little older. I can’t rememberAfter seeing many doctors. I went to a rheumatologist, who had to get a book out to see where the tender points were! He was wonderful! I pretty much just self manage it after all these years!

That tender points test was used for a long time. These days, it has been thoroughly debunked, because it's completely inaccurate. We on this forum are always letting people know that if their doctor does the tender points test, they need to find another doctor because that one doesn't have any up to date information on diagnosing fibromyalgia, and therefore probably doesn't know anything about the syndrome otherwise.

Of course, that doesn't mean you don't have fibro! And years ago it wasn't understood that the tender points test is bunk.

Managing it on your own is a lot of work, as those of us here who do that can attest. But I personally think it's the best way to go, and apparently you feel the same. I am always very happy to welcome someone who is doing their own self-management of fibro, because we can help others with tips and ideas of things that people can try. So many people don't know that they don't have to depend on doctors or on medication in order to have a life with fibro.

 

[BlueBells]

@kathybird

Hi there, I get most of what you describe, but not on medication nor do I have pain issues (though thinking that might be changing). I'll have near 'normal' days, then can't get out of my own way, head goes off for a walkabout, ahh, getting used to it

 

[GRC109A]

Hi Tibro and group,
When I think I have difficulty in keeping up with my wife is while we are grocery shopping. For me it's not physical exhaustion, but more of a sensory exhaustion... annoying music/public address system, trying to dance around people in the store aisles with my leg clumsiness, bright lights, reading product labels. I try to work on not ruminating on 'being weak'... they are only thoughts.

 

[sunkacola]

Hi Tibro and group,
When I think I have difficulty in keeping up with my wife is while we are grocery shopping. For me it's not physical exhaustion, but more of a sensory exhaustion... annoying music/public address system, trying to dance around people in the store aisles with my leg clumsiness, bright lights, reading product labels. I try to work on not ruminating on 'being weak'... they are only thoughts.

I, for one, understand what you are saying. I put off going to stores as long as I can. I have the additional deterrent that I live a 40 minute drive from the closest grocery store, pharmacy, or costco, but part of it also is that those places are very tiring to me. I never was much of a shopper, certainly not for entertainment (unless a thrift store, which I do much less frequently), but having fibro and the fact that most days are spent home with no people noise around me at all, has made it a real chore to get groceries or other things I need. Necessary, but I do it as little as I can, and try to get it all done on one day. Which is even more exhausting, and I may be tired the next day as well, but at least it's just the one day in the lights and advertising and traffic, noise, and people.

 

[JayCS]

keeping up with my wife is while we are grocery shopping ... more of a sensory exhaustion

Yeah, for me it's more physical, but also sensory.
I prefer going alone at my own pace. When she helps me it confuses me and makes it worse.
When she gets her stuff (me in an organic store, she in a conventional one) I can't help much, but still 20' is the limit, like when I get my stuff myself. She likes to get a week's supply, me less.
Luckily our shops are much smaller and nearer than US ones.