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Author Topic: Sleep Problems from Chronic Knee Pain  (Read 592 times)

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Offline Mooseloroose

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Sleep Problems from Chronic Knee Pain
« on: December 10, 2018, 09:15:04 AM »
Does anyone else on here suffer from lack of sleep because of chronic knee pain waking you up? Every night when I go to sleep, 3 hours later I am woken up by either burning knee pain or this dull throbbing ache. This is ruining my life, I can't escape it. I feel like this is a big indication for a knee replacement. My pain doesn't subside. It's 24/7. I'm only 37. I'm definitely scared for my future.

Offline Vickster

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Re: Sleep Problems from Chronic Knee Pain
« Reply #1 on: December 10, 2018, 09:47:18 AM »
Yes, I quite often need medication at night (multiple joint issues, not just the knee)

Have you tried using an ice pack before bed or applying a topical anti inflammatory? What medications are you using, perhaps discuss dosing or other options with your doctor? You could also look into using an ice machine at night. Or putting a pillow between your knees

A knee replacement should be a very last resort after all options have been exhausted. Have you consulted a patella expert (not necessarily a surgeon, might be a physio or sports medicine doctor)? There aren’t too many though. What country are you in?
« Last Edit: December 10, 2018, 09:49:09 AM by Vickster »
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline Mooseloroose

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Re: Sleep Problems from Chronic Knee Pain
« Reply #2 on: December 10, 2018, 10:10:49 AM »
I've tried icing before bed but nothing changed. I slept with a heated pad on it, still nothing. I take a Xanax to knock me out at night because I'm also having anxiety about my future. That makes me go to sleep, but it's doesn't keep me sleeping long. I read a study on NCBI that's stated if you have moderate-severe pain at rest, theres a chance your Patella Bone Mineral Density is low. I know TKR is a last resort, but this pain is crippling. I can't go on much more like this. My quality of life is severely compromised.

Offline Vickster

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Re: Sleep Problems from Chronic Knee Pain
« Reply #3 on: December 10, 2018, 10:59:02 AM »
Are you in the US? Perhaps try contacting Scott Dye who’s recognised as a PFS specialist. His protocol seems to focus on doing virtually nothing, having a steroid shot and using a COX 2 NSAID. Might be worth a consult. If an MRI is no good due to metalwork, would a CT or bone scan offer a clearer picture?
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline BusterCatLegs

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Re: Sleep Problems from Chronic Knee Pain
« Reply #4 on: December 10, 2018, 02:29:05 PM »
It sounds like you may have synovitis of the knee. I encourage you to do a ton of reading on the forum and follow some of the suggestions- reduce load and activity, gentle PT, etc. It may be a long journey to recovery. Perhaps contact Dr. Dye. You may want to read posts by suspectdevice, spiderplant...the huge long thread you posted on the other day is a good one.

Offline spiderplant

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Re: Sleep Problems from Chronic Knee Pain
« Reply #5 on: December 10, 2018, 07:56:00 PM »
It sounds like you may have synovitis of the knee. I encourage you to do a ton of reading on the forum and follow some of the suggestions- reduce load and activity, gentle PT, etc. It may be a long journey to recovery. Perhaps contact Dr. Dye. You may want to read posts by suspectdevice, spiderplant...the huge long thread you posted on the other day is a good one.
Just for the record... I almost never have had knee pain wake me up in the night. I can go to bed with pain and need sleep aids to get to sleep (btw Moose you really need to be careful with xanax...I would see a behavioral health specialist for a non-addictive sleep aid if you can, or else you are long term going to just add to your problems)  and wake up with no pain, but it creeps back as you wake up and move around. Or at least it used to :^). I think that was true of Richard Bedard. Not sure about Suspect although I know he was thankful he could still sleep. I am not sure that synovitis is what you have, but Dr Dye would still be a good bet for any knee issue.

Offline BusterCatLegs

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Re: Sleep Problems from Chronic Knee Pain
« Reply #6 on: December 11, 2018, 12:48:08 AM »
When my knees were at their worst I had issues sleeping but that only lasted a few weeks. I mean they were annoying for months and I had to sleep with a pillow between my legs and on my side in a very particular position for a long, long time but I didn't have constant severe pain all night. I would definitely get in touch with a well known knee expert like Dr. Dye and perhaps try to see a pain specialist. You could try tramadol. I took it once in a while and it helped a lot with the burning sensation in my knee. Xanax and cyclobenzaprine also helped. I would kind of rotate these around when I was in a lot of pain because they are all addictive and all have annoying side effects. I'd take one drug for a couple of days one week, a different one the next week for a day or two... and then after about two months I stopped needing drugs for pain.

I also used to make sure I iced my knee before bed and then iced again in the middle of the night sometimes when they were really bothering me.


Offline SuspectDevice

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Re: Sleep Problems from Chronic Knee Pain
« Reply #7 on: December 11, 2018, 02:58:46 AM »
Yes, I agree with everyone above.  A TKR at 37 would only be considered if your cartilage is very badly deteriorated and you are bone on bone.  Have MRIs/X-rays shown you are that bad?

Burning and aching were classic symptoms of my PFPS (which I define as chronic synovial inflammation) and like you, I could not see how I could go on in such pain.  Dr Dye is definitely your best bet.

I thought I was 90% cured, until I started ramping up my triathlon training again after 7yrs, and found out I was not,  but now I know how to control it much better, and understand what is going on, it is much easier to live with, though still annoying.

If I was really patient, I'd do nothing but gentle walking, swimming without kicking & only upper body weights for a year to see if I could finally banish it....but I'm too impatient....but you never know  ;)

I was lucky, and the burning subsided at night so I could sleep, but would come on again within an hour of rising.
L Medial menisectomy 2012
PFPS both knees 2012-2017
Pre-CRPS diagnosed 2014 (I think this was crap)
2017 - 90+% cured via Dr Dye's research
2018 - MTB crash, busted collarbone & ribs - easy compared to knees!
2019 - ride 3x/week, swim 2x/week, gym 2x/week, aiming to get back to short triathlons

Offline Mooseloroose

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Re: Sleep Problems from Chronic Knee Pain
« Reply #8 on: December 11, 2018, 03:02:30 AM »
Yeah I'm familiar with Richard Bedard, I read his book. I also read the PFPS book, read articles from Dr Dye etc... I had a traumatic injury 2 years ago. Tibia Plateau  Fracture V. My knee was put back together by a great trauma surgeon. I felt great for 2 years. Started lifting heavy again (Squats, Bulgarian SS, Romanian Deadlifts). I think that in the 2 years training like that I wore away the cartilage underneath my kneecap. Unfortunately, you don't feel cartilage damage early no nerves endings. (Which I was totally unaware if until  now. My knee never hurt, actually felt good, so I assumed it was ok. But now that my pain is so severe it's def bone on bone. I can feel my kneecap cartilage grinding, and I can feel a very hard bone grind when I flex/Extend my leg. I think my problem is laxity in kneecap, unstable joint, and post traumatic arthritis. I feel like my options are limited now. All it takes is one bad injury and you're screwed. I was completely normal, healthy, and very strong preinjury. Now my knee feels like it's 80.

Offline Mooseloroose

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Re: Sleep Problems from Chronic Knee Pain
« Reply #9 on: December 11, 2018, 03:15:34 AM »
I noticed tons of people on threads here complaining nof terrible PFPS. But then they write I can only run for 2 miles than I have to stop. LMAO I can't stand for 5min without pain. Has anyone just had trouble standing and walking?

Offline BusterCatLegs

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Re: Sleep Problems from Chronic Knee Pain
« Reply #10 on: December 11, 2018, 07:39:55 PM »
I was not able to stand for more than 2 seconds for months without severe pain. I also felt like it was bone on bone but it never was. I have mild/typical damage for my age (39) under the kneecap which is shown by MRI.

Offline Brandon123

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Re: Sleep Problems from Chronic Knee Pain
« Reply #11 on: December 12, 2018, 11:44:21 AM »
I too have problems standing for more than 5-10 min, and walking for more than 5-10 minutes. I have grade 3 cartilage damage under the knee cap. 36 years old. Tried all forms of conservative treatments and medications for +3 years to no avail. Now looking at surgery options, which is another story, as there are few good alternatives. Sometimes my pain disturbs my sleep. My point, however, is that you can be more or less disabled and in quite much pain, without being bone on bone. You need to get the exact nature and severity of your cartilage damage sorted out, before deciding what is the best next step. Adopting and sticking to the above PFSP treatment protocol is a good start.   
RK sharp pain while running, diagnosis chondromalacia patellae 6/09
RK arthroscopic chondroplasty 9/09
RK rehab, recovery, 90% normal, started running again -> back to square one 5/15
RK diagnosis patellofemoral arthritis + LK diagnosis chondromalacia patellae 8/15 -> conservative treatment

Offline Mooseloroose

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Re: Sleep Problems from Chronic Knee Pain
« Reply #12 on: December 13, 2018, 11:56:43 AM »
I would honestly rather have my leg amputated, than carry on like this. This is no quality of life. I can't do anything. You've been in pain like this for +3 years and are just looking into surgery now? What do you do for work? My next step is Arthroscopy to see what's going on because the films don't tell the whole story. So that will be in January. I'm wondering if that will help if he cleans out some of the cartilage flaps that are loose. Alternatives to this like Microfracture sucks. 3 months of NWB for a crappy Fibrocartilage that won't hold up. IDK what to next we'll see.

Offline Vickster

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Re: Sleep Problems from Chronic Knee Pain
« Reply #13 on: December 13, 2018, 01:55:30 PM »
I don't think any mfx needs 3 months NWB. Indeed the patella isn't weightbearing, so you may only need a ROM brace (if anything).  My weightbearing defect filled with fibrocartilage (infill following trauma) and has lasted 9 years for decent function (work, cycling, travel and I'm knock kneed). The plan is to mfx it next month to buy more time before replacement (am 46)

You wouldn't want an elective amputation for knee pain, with the intractable nerve pain / phantom limb that cou,d occur!

There are plenty of other cartilage techniques that could be considered for a full thickness defect if that's what is found. How old are you?

Try to keep a positive mindset. Quality of life has many different possibility, you may need to simply make some changes  or find alternatives for activity, hobbies while you allow your knee to heal :)
« Last Edit: December 13, 2018, 01:58:36 PM by Vickster »
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline Mooseloroose

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Re: Sleep Problems from Chronic Knee Pain
« Reply #14 on: December 13, 2018, 02:14:19 PM »
I'm not gonna be able to be active anymore and lift. I'm  37.

Offline Vickster

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Re: Sleep Problems from Chronic Knee Pain
« Reply #15 on: December 13, 2018, 02:23:43 PM »
You can be active in different ways, just need to find what suits. You can still upper body lift. Keep your legs strong swimming, cycling, rowing etc. No need to squat to be fit and healthy

At 37, other cartilage options should be open to you. Plenty of patella/cartilage specialists in the US

https://www.kneeguru.co.uk/KNEEnotes/primers/whos-who-knee-surgery
« Last Edit: December 13, 2018, 02:39:09 PM by Vickster »
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline Mooseloroose

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Re: Sleep Problems from Chronic Knee Pain
« Reply #16 on: December 13, 2018, 03:01:57 PM »
Vickster thanks for continuing to help me figure this all out. Are you on Facebook by any chance? Or do you have WhatsApp? I was wondering if I can message you. 

Offline Vickster

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Re: Sleep Problems from Chronic Knee Pain
« Reply #17 on: December 13, 2018, 04:25:01 PM »
Now you’re on 20 posts you can private message
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline reader278

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Re: Sleep Problems from Chronic Knee Pain
« Reply #18 on: December 15, 2018, 07:56:00 PM »
I think there is a lot of pain catastrophizing going on here. Read Explain Pain by David Butler. What I did is start tracking my pain levels for a few months,  find the level of actitivty where the pain is managable, then did a gradual activity progression and gentle strengthening. If you get caught up in these negative thoughts about your future it will heighten your anxiety, depression and pain. There are many people with arthritis who feel NO PAIN, didnt even know they had an issue till it's found incidentally on imaging. pain is complex and often doesn't even correlate fully with tissue damage. In fact, all pain comes from the brain. the peripheral tissues send nociceptor signals of temperature, pressure, etc, but the brain decides where or not something is 'dangerous' enough to produce pain. that's why two people can have the same injury and have very different experiences of pain.  and a brain can actually upregulate inflammaion.   And remember, pain flairs are normal but they will settle with time-think of them as just a "bend in the road" to recovery.
« Last Edit: December 16, 2018, 05:43:25 PM by reader278 »

Offline spiderplant

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Re: Sleep Problems from Chronic Knee Pain
« Reply #19 on: December 17, 2018, 04:34:29 PM »
I think there is a lot of pain catastrophizing going on here. Read Explain Pain by David Butler. What I did is start tracking my pain levels for a few months,  find the level of actitivty where the pain is managable, then did a gradual activity progression and gentle strengthening. If you get caught up in these negative thoughts about your future it will heighten your anxiety, depression and pain. There are many people with arthritis who feel NO PAIN, didnt even know they had an issue till it's found incidentally on imaging. pain is complex and often doesn't even correlate fully with tissue damage. In fact, all pain comes from the brain. the peripheral tissues send nociceptor signals of temperature, pressure, etc, but the brain decides where or not something is 'dangerous' enough to produce pain. that's why two people can have the same injury and have very different experiences of pain.  and a brain can actually upregulate inflammaion.   And remember, pain flairs are normal but they will settle with time-think of them as just a "bend in the road" to recovery.

Good post. Sadly, after my last optimistic post, I have been having more troubles recently and have been pretty down about it.   So, yes, going backwards as Suspect says. I am also on very little by way of pain meds (down to 100g gabapentin 3x per day) so I may have t go back up.

Offline reader278

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Re: Sleep Problems from Chronic Knee Pain
« Reply #20 on: December 18, 2018, 01:01:49 AM »
It's important to remember pain flairs are normal with persistent pain, everybody gets them. And recovery is not linear. Think of overall progress measured in months.....at least that's what i tell myself

Offline spiderplant

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Re: Sleep Problems from Chronic Knee Pain
« Reply #21 on: December 22, 2018, 04:56:40 PM »
Thanks!  I needed to hear that.















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