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Author Topic: I am just so tired of hurting all the time.  (Read 3719 times)

Offline Brambledog

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Re: I am just so tired of hurting all the time.
« Reply #15 on: February 10, 2013, 12:16:37 PM »
Oh my goodness yes... :( Chalk me up on the list.

I've had CRPS for 18 months, didnt get the aggressive treatment I should have had in the early months, and it spread from my left knee to my whole leg. That was bad enough, but two weeks ago things took a major turn for the worse after my physio tried to get me walking more upright, and now my knee is so swollen and I can hardly walk. I've been stuck upstairs a lot of the time (no loo downstairs), and the pain is just awful so much of the time. Like with most of us in this boat, nights are the worst - I can't get comfortable and I keep waking from the pain.

My situation is no worse than any of you, my pain no more intense. I do feel for every one of you that has to deal with this day in day out, it is soul-destroying.

It's lovely to know you are all reaching out to others coping with this, and offering comfort and solace. I hope we all find the strength we need from knowing we are not alone. It does help a bit  :)

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline atleastmycaneiscool

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Re: I am just so tired of hurting all the time.
« Reply #16 on: February 18, 2013, 12:47:55 AM »
YES.  All of it, YES.  I fell at work nearly two years ago and could never have imagined the rabbit hole this entire situation has turned into! 

My first workers' comp doctor told me to "walk it off" for 4 months...by the end, he wouldn't even return phone calls, he'd just have a service deliver buckets of vicodin to my house.  My employer's insurance told them I had to go back to work because I had a desk job...no knee required, apparently.  Problem was, my job entailed a significant amount of higher brain function, which can't be done when either stoned or in tears from pain.   I felt like a total loser..."Sorry, can't do my job because I'm a sissy or I'm stupid."  I went from being a fairly confident and happy person to being a blob on the couch who couldn't focus enough to finish a book.  I finally had to get an attorney involved. The lawyer helped me find a good OS, and he was amazing.  Diagnosed a dislocated patella and I was scheduled for a lateral release and chondroplasty within a week.  After the scope, doc said he was confident I should be able to avoid a second surgery as long as we were focused and diligent with the recovery PT.  Things started looking up....then immediately came crashing down around me when the OS passed away rather suddenly about 4 weeks after my procedure.  Because it's a workers comp case, his office ran into problems getting another doctor approved to take over my case.  So for 8 weeks my recovery stalled.  By the time they were able to get another doctor in to see me, I was past the point of no return.  The insurance company, however, wouldn't approve additional care because I was so far out from my procedure.  Again, I had my attorney step in and get approval for me to see yet another doctor.  New doc is also amazing...however, patella now officially considered "detached" and in I went for knee surgery Round 2.  I'm now 8 weeks post-op from a MPFL reconstruction, chondroplasty, and I forget what the other part was called....involved shaving off some of my meniscus.    I am back in PT and just last week started walking with a cane.  My biggest problem now is that I have almost zero muscle in my upper thigh.  Two years of not walking properly (if at all) has really screwed up my leg and that is wreaking havoc on my recovery.  Ugh....baby steps, I guess.

Sadly, that's just the medical part. I am pretty sure my husband is going to leave me.  He has made a point to let me know that he is miserable and hates that our life isn't what it was.  I have two dogs...he is a cat person.  For the last 2 years, he is the only one who can walk them and he resents it most of the time.  I used to be very social and when we weren't going out I was throwing dinner parties at the house.  None of that happens now.  I miss sleep.  I miss hiking.  I miss walking my dogs.  I miss walking on sand.  I miss adventuring.  I miss feeling alive.  Yes, it sounds overly dramatic, but I don't know how else to say it.   I'm tired of the pity looks whenever I have to prop up my leg in a restaurant so I don't end up in tears by the time dinner is served.  I'm tired of feeling like a huge albatross around my husband's neck because I can't do the things we used to love anymore.  I'm tired of feeling like a loser because "its just a knee" and "so many people have it worse".  I'm tired of being so f'ing TIRED all the time.  And mostly, I'm tired of talking about it and just want to get on with my life again.

So YES, I understand where you're coming from.  You are not alone.  You are not crazy.  In addition to the support shown here, all I can add is CALL A LAWYER.  You should NOT have to be stuck doing PT at your place of employment.  To call it a conflict of interest on their part is a gross understatement.  You deserve an advocate and some peace in knowing someone can (if only a little) take on some of the pressure.  Best of luck in your recovery!!

Offline Brambledog

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Re: I am just so tired of hurting all the time.
« Reply #17 on: February 18, 2013, 09:18:54 AM »
YES.  All of it, YES.  I fell at work nearly two years ago and could never have imagined the rabbit hole this entire situation has turned into!.

Sadly, that's just the medical part. I am pretty sure my husband is going to leave me.  He has made a point to let me know that he is miserable and hates that our life isn't what it was.  I have two dogs...he is a cat person.  For the last 2 years, he is the only one who can walk them and he resents it most of the time.  I used to be very social and when we weren't going out I was throwing dinner parties at the house.  None of that happens now.  I miss sleep.  I miss hiking.  I miss walking my dogs.  I miss walking on sand.  I miss adventuring.  I miss feeling alive.  Yes, it sounds overly dramatic, but I don't know how else to say it.   I'm tired of the pity looks whenever I have to prop up my leg in a restaurant so I don't end up in tears by the time dinner is served.  I'm tired of feeling like a huge albatross around my husband's neck because I can't do the things we used to love anymore.  I'm tired of feeling like a loser because "its just a knee" and "so many people have it worse".  I'm tired of being so f'ing TIRED all the time.  And mostly, I'm tired of talking about it and just want to get on with my life again.

Oh it is crap, isn't it. My husband has been pretty good overall, but it is hard when I know he is feeling that life kicked him too with this, and he is the one picking up all the pieces. He gets frustrated sometimes, and I just feel guilty the whole time... The restaurant thing really chimed with me - I did this just the other night on Valentines when we actually went out for a meal. He had booked it (we never normally do anything) and even though I wasn't having a good day knee-wise I couldn't let him down, so we went. It was a lovely meal, but oh my leg... Every time we had to wait for a course to arrive I was fidgeting, trying to get more comfortable, and in the end had to sideline a chair from another table, switch places, and there was me with my leg up. People staring, and judging, and (as you said) prob thinking what's the big deal, good grief. Oh well.

The crutches drive me spare as well, because even if I can get myself up the damn stairs to the loo, or make my own cuppa, I can't carry anything. Lunchtime is worst! I feel I Should be tidying but can't carry stuff, just order the kids about again, sigh  :-\

Hang in there. We do understand. I started a thread ages ago called 'knee pain, the third party in my relationship' which has a lot of this kind of stuff. Makes it a tiny bit easier knowing you're not going crazy and others are dealing with this.

Good luck, and I hope you can finally get started with a good recovery now. Baby steps is darn right!

Good luck everyone,

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Phantom_cw

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Re: I am just so tired of hurting all the time.
« Reply #18 on: March 04, 2013, 11:53:34 AM »
Hi there cherokee,

I'm sending my thoughts out to you with your situation and I hope you find some relief soon. It's been a while since your posts and I was wondering if you ever got anywhere with it? We're all here hoping the best for you. If any of us have any progress it can really brighten up our day and if not then we can continue to be there for you. If you give up on the med staff, then one thing is sure you don't need to give up on the people on this forum. :D

Quote
The crutches drive me spare as well, because even if I can get myself up the damn stairs to the loo, or make my own cuppa, I can't carry anything. Lunchtime is worst! I feel I Should be tidying but can't carry stuff, just order the kids about again, sigh 

I've found keeping two small backpacks at either end of the stairs particularly useful when I'm crutch bound, that way I can put any bits in that I need to take up and down stairs. As I'm not particularly organised at home I've found this a great way to cut down the amount of times I have to go up and down. I've also started borrowing my partners thermos flask so I can take my coffee around with me and don't have to keep getting up and down,  and I fill up juice bottles and keep them dotted around the house. I've considered buying one of the crutch pods but I don't know how stable they are. I don't use the crutches too often so I'm not sure it's worth the money when the backpacks are working at the moment. Also  I've started stashing pain meds in two places upstairs and two downstairs so I can be confident that there should be some to hand at any given point. I work away from home at night shifts so I have some pain meds and spare inhalers in my drawer there, and I also keep some at my friends house, and try to throw some spares in every bag I use frequently (I virtually never leave the house without a shoulder bag or backpack) just so I don't have to worry if I get stuck somewhere longer than I planned or get an acute pain attack I know there should be some relief close by. My friend invested in a mini fridge for cool packs and drinks upstairs. I get tired of analysing everything in such detail but anyone with disability or chronic pain will understand this nearly neurotic level of planning.   :o

Anywho.... give us an update Cherokee we're all rootin' for you.
Nobody realizes that some people expend tremendous energy merely to be normal.
-Albert Camus

Offline Brambledog

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Re: I am just so tired of hurting all the time.
« Reply #19 on: March 04, 2013, 02:27:00 PM »
Hi Cherokeegal,

As Phantom says, itd be lovely to hear from you, andi do hope you are feeling a bit easier these days, and able to enjoy things more. So let us know.

Phantom - Lol, yes I've worked out the crutch tricks now, and have a bag I wear to carry stuff around. I make a big flask of tea in the morning and have it in the living room with me. I also keep meds upstairs and down, it has saved me from missing a dose a few times!

I'm doing better at the moment, still having to use crutches most of the time, but I can do a few steps now without them and am working hard to try and increase that slowly. The pain isn't as bad (mostly, lol), but I do have to be careful not to cross the invisible line into 'overdid it' territory. I've reduced my nerve meds amd it has made no difference to the pain, so I'm realising that they haven't been doing much, as suspected. Slow and steady...and hopeful :)

All the best everyone, hope things are improving.

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline Phantom_cw

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Re: I am just so tired of hurting all the time.
« Reply #20 on: March 05, 2013, 04:32:21 PM »
Brams- I hope I didn't sound patronising just super keen to help if I can. For a relatively smart person there's quite a lot of common sense solutions that I miss in life ;D
Nobody realizes that some people expend tremendous energy merely to be normal.
-Albert Camus

Offline Brambledog

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Re: I am just so tired of hurting all the time.
« Reply #21 on: March 05, 2013, 05:25:48 PM »
Lol, no offence taken at all!  :) All suggestions are helpful, you never know when someone will have a little trick that really helps to improve your day...

Brams  ;)
2009 - diagnosed coeliac
Aug 2011 - L knee arthroscopy
Aug 2011 - diagnosed PF arthritis L knee
Nov 2011 - diagnosed CRPS L knee
Dec 2011 - MRI R knee, PFOA is worse than L!
June 2012 - no surgery 'til TKR's
Nov 2012 - CRPS spread to L foot/thigh, increasing pain
- Worsening pain/symptoms R knee
;-)

Offline MoltenSkyn

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Re: I am just so tired of hurting all the time.
« Reply #22 on: March 10, 2013, 11:00:49 PM »
Phantom - Lol, yes I've worked out the crutch tricks now, and have a bag I wear to carry stuff around. I make a big flask of tea in the morning and have it in the living room with me. I also keep meds upstairs and down, it has saved me from missing a dose a few times!

I work on a 2nd floor and having a bag (backpack I guess) to carry stuff may sound too obvious as phantom says but It hadn't occurred to me -_- ... I sometimes bring a cane to work to fight the stairs and doing so holding my small purse is really hard, specially when it is  heavy beacuse yes... I'm wise enough to bring my lunch upstairs...

I'm really happy (relatively) to see that I'm not alone in this. I feel so depresed somedays... and yess, people can be really... I'm 22 and whenever my knees & sciatica condition is mentioned they go "OMG but you're so young, that doesn't make sense! that is really weird, that shouldn't be happening to you" and I'm like "oh, you don't say".

I'd love to hear more tricks and tips. Specially if someone knows the best way to climb stairs. Right now when I don't bring my cane I do it with my arms. Yeah, I use my arms and it looks as if I'm doing rapel or that I'm scared of heights. I trully don't care how I look, (but oh yes, the co workers laugh and make faces all the time...) I will take care of my knees because I'm grateful that I can at least go up the stairs... for now...

Yeah, sorry... I want to be positive and happy.
Hugs to you all and keep it up! I know we can get through this!!!  :D