Swollen leg leaves me frustrated : So a short bit... - PMRGCAuk

PMRGCAuk

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Swollen leg leaves me frustrated

artfingers profile image
19 Replies

So a short bit of background: I travel to Maine in U.S. every August to "climb", hike, swim (float really) and kayak. Last year was rough and I mostly kayaked as my ACL's and MCL's (medial cruciate ligaments) in both knees are torn. This year I only managed two tiny mountains 5 days apart and bam, my right knee swelled up and stopped me dead in my tracks. (I'm writing this after going to hospital where they said keep leg elevated above heart, take ibuprofen alternating with tylenol every 3 hours and ice every 15 minutes, ugh.) I had had a discussion with my new Rheumy that she thought I didn't have PMR but rather my pain was all due to "mechanical" issues with my knees. (Probably due to the fact that I had surgeries on my shoulders and hips fixing tears and ligament issues that handled almost all pain in those areas). I was not convinced as I felt PMR could move around and "attack" different areas of my body which it had for me. I then asked her how could my inflammatory markers regularly flare quite high 87 Sed rate and I think something like 30ish CRP- enough to need pred to keep them down and handle my pain? I told her I thought BOTH things were going on simultaneously. Sure, I could mask the knee ligament tears pain with pred, but my history before the tears proved to me it was PMR. She didn't have an answer for that. So anyway, even though I am not "bone-on-bone" in my knees, my orthopedic dr. says only knee replacement will fix the inability to walk or run or climb. Sheesh! I got a second opinion, same verdict. I was cruising along semi-okay just riding a stationary recline bike and walking around the house but my right leg did NOT like being pushed to climb up and down. So two more weeks of vacation sitting inside immobile. I guess I shall have to knuckle down and handle the "mechanical knee issues" - then see if the pain gets sorted out. So frustrating.

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19 Replies
PMRpro profile image
PMRproAmbassador

Grammy80 is heading over to Maine this week!!! Popular place. Wonder how far apart you are ...

artfingers profile image
artfingers in reply toPMRpro

Maine is a stunningly gorgeous place with lots of lakes. Lovely really.

Keyes Pond in Sweden, Maine
Kendrew profile image
Kendrew in reply toartfingers

Wow!

Grammy80 profile image
Grammy80 in reply toartfingers

This Grammy just flew in last night....'from that stunningly gorgeous state'~!!! I'm so sorry to hear of your knee issues, but it sound like you know what you have to do. At least you are laid up and surrounded by beauty. I was around Cobbossee and Sebago Lake enjoying friends, to the max. If it were possible I would 'pick my world up' and drop it there. I do have friends in Eustis too. Good fortune your way with the knee...sounds like not much keeps you down~!💕

Kennebec River, Hallowell Wharf
piglette profile image
piglette

Everyone I know with knee replacements are very happy. I think things have improved enormously with both knee and hip replacements recently.

Wallysma profile image
Wallysma in reply topiglette

Hi...do you know of anyone who did both knees at same time? If so how did it go?

piglette profile image
piglette in reply toWallysma

I know several people who had both hips done at the same time, but I can’t think of anyone who had both knees done. I am sure people have done though. The people who had both hips done that I know were pretty fit types and relatively young. I am not sure I would want to do it.

PMRpro profile image
PMRproAmbassador in reply toWallysma

Not really recommended because of the rehab - knees are harder than hips.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

Most definitely....

readingbooks profile image
readingbooks in reply toWallysma

I did , 19 years ago ,and have never regretted it. I was a fit 65 at the time and spent 5 weeks in a rehab hospital which had a warm water physio treatment pool !! It was tough going at first but progress was steady and now, 19 years later, I have few problems with my knees although they, like me, are aging.!

PMRpro profile image
PMRproAmbassador in reply toreadingbooks

The option of 5 weeks in a rehab hospital might swing it for me - but that ain't going to happen in the UK is it!!!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

Nah……😳

Wallysma profile image
Wallysma in reply toreadingbooks

Congrats! I gave adjusted life to be someone with bad knees, fibromyalgia, Sjogrens, RA, OA. I worked in crazy non-profit fundraising including directing large scale events where folks walked 60 over a few days sleeping in tent cities. Very physical jobs, one year recruiting, teaching folks how to raise money, logistics, then the event: with no sleep for 3 weeks (prep the trucks and logistics; registration, opening ceremonies, the actual "moving" event, closing, and tear down. 5 bike rides, 2 walks...breast cancer and AIDS got multi millions. Then returned to a busy office type.position. Finally 30 years of wonderfully crazy work caught up n with me. I was burned out 100% (I was put on atenolol for adrenal fatigue) my knees hurt more than ever ...duh. but all of the other symptoms caught up with me as well. Medications kept me working and functioning. I was so glad. But.my world kinda crashed. I had to go on disability. It was so hard....but I didn't have anyno choice. I was working with an amazing rheum. We adjusted meds, ran tests, took x-rays and MRI's when necessary. Life was different. Then the opioid drama hit and life got complicated. I can't even explain. I did well on them. All I wanted was pain relief...and that is all I got. Having meds that worked without side effects was a Godsend. But.now I had to jump through hoops and could not get.the break-thru pain meds I needed for times when things got really bad. As you know living with untreated pain wears you down. So things changed. I had no energy to consider knee surgery and I was afraid my.pain would not be managed. I had gotten myself to a good place physically lost weight, ate healthy, was walking every day. I was forced to go to my first pain doc. It was bad. She changed everything the first day. I got so sick..everything fell apart. She didn't care. After a couple of months I left. The 2nd person agreed to the meds and doses I had done so well on. Then on my 3rd visit she said she was reducing the dose no discussion. I had lost my footing by then. My pain was constantly high.

I wasn't walking, hard to prep food and cook. Went to my 3rd doc and she was sane and trustworthy and put me back on the.meds I was on at the beginning reduced by 1/2 dose. I had.planned to downsize and move to one a level home when I was doing well and considered getting my.knees done. I started...then Covid hit. Fast forward to last year I downsized, sold my.house and found a great new.one level small house. I love my house. But post move I got sick..no surprise and then the strange symptoms of PMR which I thought was RA. Now here I am sitting in my.house juggling prednisone trying to figure out what this is...how does it fit with everything else and how can I possibly get to functioning more....I still have stuff to do with the house...but energy and pain stops me. Please read that last line with major whine in your voice. I am an extremely unhealthy 66 year old...while I am drained by increased knee pain I don't feel I am in a good enough state

to take on one or two surgeries. I have had 2 ankle surgeries in my 20's and they were hard. So......sorry I am blathering on. I never talk about this stuff so I find my brain taking off at break neck speed. I have a lot to figure out to move beyond this place. You all are being so helpful and supportive...I have gratitude! Thanks for your reply. Be well.

artfingers profile image
artfingers in reply toWallysma

Yes, I feel for you! I have, probably unwisely, put it off, then Covid hit, then my surgeon wasn't seeing folks just doing emergency stuff. Finally, he is back again "full time". It is just very intimidating, unlike any of my other surgeries to be honest. But to be able to do things again, I shall get one more "second" opinion, then move forward when I get back home. Ugh.

Bcol profile image
Bcol in reply toWallysma

Hi Wallysma , forgetting, for the moment, your other problems if you have been diagnosed with PMR then you have to accept that you have a long term systemic disease which is likely to last from one to more likely anything up to six years. There are members here who are going on ten years plus. Your old life will need to adapt around the new "possible". Your work around the house may need to happen in short well managed stages, with lots of rest in between. Prednisolone is the only thing which keeps the inflammation under control, doesn't cure anything, but gives you a workable life, it can't be rushed and having a peruse through the FAQ's on the forum is time we'll spent.

squashie profile image
squashie

I have a 96 year old neighbor who has two artificial knees. He regularly walks 5 - 6 K a day, sometimes a bit slowly, but with no knee trouble at all. He was in his late 80's when he had the knees replaced.

artfingers profile image
artfingers in reply tosquashie

Thank you, that is encouraging to me!

PMRpro profile image
PMRproAmbassador in reply toartfingers

People here with new knees are back skiing ...

Nextoneplease profile image
Nextoneplease

Hi, I had my knee joint replaced after a long period of putting it off because of caring and work responsibilities. Finally the surgeon got quite blunt with me and told me I needed to have it done if I wanted to stay mobile (“we look out for people like you”).

I’ve had various illnesses since then which have complicated things, but can honestly say the knee replacement was one of the best things I’ve ever done. Yes, the rehab was quite lengthy but it was doable and definitely worth the effort. So enjoy the peace and beauty of Maine if you can, and I hope you get the mechanical issues sorted soon.

All the best 😊x

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