Fatigue

[Kittykat12]

hi new to the forum and in process of being diagnosed with fibromyalgia. Had all the tests to rule out other possibilities and then covid struck the world. My sister has both fibro and ME and arthritis. I started with arthritis and think I definitely have fibro. I still work part time and have small dog walking business. Up until the lastv12 months I would also hike with friends 12 miles or more but these days I cant manage more than 5 and then it takes 2 days to recover. Yrsterday I gad free day I could hardly stand to make a brew felt my legs were going to buckle, felt dizzy and a bit sick so took it easy all day, by late afternoon I felt OK. Is this the norm can it just go as quickly as it comes? Pain I can get used to fatigue is a far different matter for me

 

[RLG]

Hi, Kittykat. I am new to this board, as well. Officially diagnosed 2 weeks ago, but it was no surprise--I have known it was fibro for months. Just academics for me at this point.
Your post strikes me for several reasons, the first of which is that I, too, am normally very active--walking, camping, kickboxing etc. I am not an athlete or anything, just really enjoy physical and outdoor activity. But the pain, fatigue, dizziness, nausea and so much more are tough to deal with. As for the dizziness, it is one the worst issues for me sometimes--have to pull of the road when driving sometimes it's so bad. Vertigo while lying in bed! Look into orthostatic hypotension and POTS.
My workouts can knock me out bad (no pun intended). After an hour of cardio kickboxing I FALL OUT for 2-3 hours and need 2-3 days to recover now form the debilitating pain and fatigue.. I realize some fibro friends will think "ha, at least you can still even do it". Its relative--I force myself because I love it. I am stubborn, don't want to give up my JOYS in life. Even crochet is an extreme sport for me these days, but it makes me happy despite the pain.
I have only just begun this journey of healing and will soon share my full story of how I wound up here. For now, Kitty, these are my go to-s...ibuprofen actually helps me to continue exercising. Ice on the very worst areas--knees, hips, THIGHS, wrists, back of jaw. Tons of stretching, both before and after workouts, even in a warm shower when the heat can penetrate the best. Lots of hydration...low sugar gatorade, minimal caffeine.
These are such empty offerings, I know!! Like we don't all do those things already, right? Just please don't stop. Keep fighting!
I am not financially equipped to chase dead-end treatments, but I am going to try accupressure or myofascial release, and will see a rheumatolgist next week to discuss the possibility of co-morbidity arthritis. Will report back on it after.

Morgan Freeman says, "I only get one life, and I will not let fibromyalgia take the joy from living it." ME EITHER!!

PS--the scariest symptom these last few month for me has been weakness and trembling in my limbs. Legs unstable.

 

[mrsk0403]

Hi! I wanted to touch on some of the things that you both had talked about in your posts. I found them very interesting to read and can understand where you're coming from. Before I was diagnosed with FM I had gotten into Yoga and was very in shape. My situation may be a bit different, but I had to stop the intense yoga I was doing because my joints are hyper-mobile and it was causing more harm than good, even though I didn't know it at the time. My exercise has definitely slowed down, but it just takes time to figure out what works and what you can handle. Some days are better and you can handle more, some days are harder and you need to take it more easy on those days. I have also noticed that the resting between workouts is soooooo important. I find that I have to be careful to not overdo it when exercising. For me that also means taking into account the weather outside if i'll be outside and just how i'm feeling that day specifically. It's frustrating but don't give up! I've also been reading other posts from people who have been able to work through it and get to a really good exercise routine that works for them and they feel great (one person specifically said that he was in the best shape of his life)! I completely understand the frustrations with fatigue too... I struggle with that a lot myself. The fatigue ranges from general tiredness to complete exhaustion that can make me feel fuzzy and generally not good all over. This summer has been especially bad for me with the fatigue, but I've also learned that patience is such a good thing to have with the FM. I have days where I get overly frustrated and break down about it, but I try to remind myself to take things day to day. Some days are better than others, that's just how it is. I also wanted to touch on the comments about POTS and orthostatic hypotension. Years ago, before being diagnosed with FM, I was treated for POTS and it felt like my whole life had changed and wouldn't go back to normal. It also felt like no one knew what POTS was nor did they understand which made things even more frustrating. I would get up from sitting and almost pass out... there was a time this happened almost every time I stood up. I would start to black out and have tunnel vision.. so bad to the point where I couldn't support myself standing and my body would just shake uncontrollably until my vision came back.. my husband would have to come catch me before I fell. I always got my vision back and the light headedness cleared just before passing out.. I found myself to be lucky that I never actually hit the ground. If it ever did get that close to me falling and my husband wasn't around I literally would just plop down on the ground so it wouldn't be so far a drop. This of course came with a plethora of other symptoms.. but if you have the fatigue and notice dizziness and weakness, this could be worth looking into for you. I was put on some low dose medications to help with my blood pressure and it helped immensely. The POTS symptoms eventually faded more into typical FM symptoms and i'm just treated for the FM now. I still do notice on bad days that I have symptoms similar to the when I had the POTS so I believe that for me, they are both 100% connected. I know this post was long, but I hope it was a least a little helpful/encouraging to read.

 

[RLG]

mrsk, thank you. Your story actually helps me to remind myself that I am definitely not the only one who experiences this. It can be terrifying...and dangerous. This is like a pandora's box or wheel of MISfortune. For me, to both of you and anyone else reading this...your physical exercise routine is YOUR gift to YOU.. it is your phys rehab, your prescription for wellness. I can no longer compare myself to who I was or THOUGHT I was. I found my type of exercise and hobbies that heal ME, and am deeply grateful to have them. Please do not judge yourself if it isn't how it used to be...you are here now, and that's pretty good, right??
EX: I know a young man who was paralyzed from the waist down last summer on a trampoline. I cannot even imagine the pain and terror and struggles of his recoveries, but i can for my own reasons (again, to be touched on more soon) relate to many feelings and accomplishments.) Our successes may be limited to "hey, I brushed my teeth and did a load of laundry today!! Or, "hey, I made it all the way through Tae Bo today" Or "Hey, I only had to lay down for one hour after I shaved my legs today."
Kittykat, celebrate your successes and enjoy those moments...if 5 miles is your healing therapy today, please know that is AMAZING. If digging deep to find the strength to just lift a fork to your mouth at dinner and it takes you 5 minutes to chew it...that is amazing!!
Not that I condone it, but if slamming some shots of crown royal straight up is what helps give 20 minutes of relief from the unbearable nerve pain one night 2 weeks ago, even my doctor says...go for it lol

 

[mrsk0403]

mrsk, thank you. Your story actually helps me to remind myself that I am definitely not the only one who experiences this. It can be terrifying...and dangerous. This is like a pandora's box or wheel of MISfortune. For me, to both of you and anyone else reading this...your physical exercise routine is YOUR gift to YOU.. it is your phys rehab, your prescription for wellness. I can no longer compare myself to who I was or THOUGHT I was. I found my type of exercise and hobbies that heal ME, and am deeply grateful to have them. Please do not judge yourself if it isn't how it used to be...you are here now, and that's pretty good, right??
EX: I know a young man who was paralyzed from the waist down last summer on a trampoline. I cannot even imagine the pain and terror and struggles of his recoveries, but i can for my own reasons (again, to be touched on more soon) relate to many feelings and accomplishments.) Our successes may be limited to "hey, I brushed my teeth and did a load of laundry today!! Or, "hey, I made it all the way through Tae Bo today" Or "Hey, I only had to lay down for one hour after I shaved my legs today."
Kittykat, celebrate your successes and enjoy those moments...if 5 miles is your healing therapy today, please know that is AMAZING. If digging deep to find the strength to just lift a fork to your mouth at dinner and it takes you 5 minutes to chew it...that is amazing!!
Not that I condone it, but if slamming some shots of crown royal straight up is what helps give 20 minutes of relief from the unbearable nerve pain one night 2 weeks ago, even my doctor says...go for it lol

I agree with you SO much! It's hard to get past the frustration sometimes but each day is different and there are accomplishments in every day, no matter how small!

 

[Kittykat12]

Hi thanks for your responses. Have yo say POTS is not something I have heard much about. There are so many sides to fibromyalgia no wonder doctors struggle. Im not giving in to it but I am learning what is important in life and no longer feel guilty if I have a down day to recharge. I used to be obsessed with hoovering every day and now I no longer feel the urge. Im cutting down on sugar as I was a very big sweetie eater. Its amazing what it is hidden away in so far so good. Once covid eases and I can get injections in my hands and feet for arthritis i should be in a much better place.

 

[Eff2013]

Hi, I am new here too and in the process of being diagnosed. I'd like to say that you are all amazing and courageous. Life is very difficult at the moment with so much going on around the world. Reading your posts makes me feel less alone in this struggle. Having this forum to share your pain and experiences is really beneficial. Everyone .......keep strong.

 

[RLG]

Kittykat,, I see you have a a physical job like I do. I've done manual labor for my entire adult life. I am known for being more than a little obsessed with pleasing others--work ethic, volunteering, giving it all and leaving it all on the field. This past year and half were unbelievably challenging for me in ways no one would ever have imagined or understood, especially because I viewed it as my problem not theirs. I am not sure how I survived the ever increasing fatigue, pain, nausea, dizziness, weakness etc and still managed to make it through most days. I do know that inside I was terrified and angry. I knew I could no longer keep up the pace and level I once could, but am way too proud to admit it. Now I know that I can still do some of it, at a different pace and different level. I am extremely fortunate to have an understanding and stable spouse and adult child that are here for me.
The dizziness and fatigue are no joke. it feels like being to told to climb a mountain like my life depends on it after being blindfolded and spun around in circles over and over til I don't know which way is up. Then climbing that mountain with an extra 40-50lb weight attached to my limbs and little invisible terrorists stabbing me with hot ice picks. And rats gnawing all the way through my skin and scraping their sharp teeth on my bones.
Any of that ringing true for you?
Take care of YOU. You deserve wellness. Make safe choices. Advocate for you. Rest. Your body is brilliant, love it.

 

[RLG]

Eff, welcome. This has been a huge revelation and comfort for me, as well. So much to learn. New avenues and ideas to try. Keep up the hope and meet it with resolve and acceptance. WE ARE NOT ALONE in a crazy world and our painful bodies.

 

[mrsk0403]

Hi, I am new here too and in the process of being diagnosed. I'd like to say that you are all amazing and courageous. Life is very difficult at the moment with so much going on around the world. Reading your posts makes me feel less alone in this struggle. Having this forum to share your pain and experiences is really beneficial. Everyone .......keep strong.

Thank you for your comment!

 

[RLG]

To kitty, Eff, and mrsk--thank you all for this thread. This conversation alone has been more beneficial to me than about the last 2 dozen I have had with others in the last couple of years about it. That is really saying a whole lot!!!
Wishing peace, restful night's sleep, and pain free days of joy and productivity to you all!!

 

[mrsk0403]

To kitty, Eff, and mrsk--thank you all for this thread. This conversation alone has been more beneficial to me than about the last 2 dozen I have had with others in the last couple of years about it. That is really saying a whole lot!!!
Wishing peace, restful night's sleep, and pain free days of joy and productivity to you all!!

I'm so glad! I've found this thread in particular to be very helpful and enlightening as well!

 

[sunkacola]

RLG, I so understand what you are saying. I was always the same way and after living with fibro for years now I am still not fully adjusted to how I have to live now, although I have gotten better at it. I think (although have nothing to back this up) that fibro probably is more common in people who have led very hardworking and active lives. Not fair, since working hard is what one is supposed to do and being active is good for your body and mind both. Fortunately there are still ways to do things we used to do, maybe we just have to find different ways to do them. Best of luck to you.

 

[Freddie]

I have had fibromyalgia for 34 years and fatigue can be a great part of it, with daily pain, sleep problems, being too hot , being too cold, sinus inflammation , IBS, this and more trying to cope with daily living.

 

[Creola17]

34 years!!! OMG Freddie!
(((GENTLE HUGS)))
You deserve an award. I thought my 5 yrs was a long time. How do you do it? How do you feel? I've been wondering what the future is going to be like. Any words of wisdom please?