TKR TKR with Fibro and Raynauds and RA, anyone else?

[Jamie]

I have a question. I’ve noticed the last couple of mornings when I wake up (after always having toes above nose for both knees now) and sit at the edge of the bed and stand up, things feel quite good and flexion is good and whilst stiff when beginning to walk, it’s ok once I get going, (although still not as good as last Tuesday week), but within minutes as I stand at the sink I can literally feel my knees tightening up with swelling and pressing onto my clothing. Then when I walk again it’s not really loosening up on walking.

Obviously gravity may well pull fluid back down into the legs/knees but this is my sixth day of legs elevated above my nose and pretty much allowing my knees a complete rest day and night. I don’t really get it, unless the overactive inflammation in my body is just responding to any aggravation, no matter how slight.

Any thoughts?

@beralc …. The first thing to remember is that being a little less than 2 months out from your surgery, you are very, very early in the recovery process. Standing is always going to be more difficult than moving about for quite a while. It’s why we caution people about attempting household chores because they can involve a lot of standing (especiallly meal prep).

The elevating you’re doing is good. I do hope you’re getting up to walk around every hour or two for 5-10 minutes. When we say to rest, ice, and elevate we don’t mean that you should be on the couch all the time. (You probably know this, but I’m writing it just for people who may be reading and not understand that gentle movements and challenging your knee throughout the day and night is important.)

When you feel yourself tightening up, that’s your body’s signal that it’s had enough for a while. I suggest you try shorter standing periods of time. If you have something you want to do, see if you can sit and do it or at least lean on a tall stool to take some weight off your leg. But the best thing would be to go sit or lie down for 15 minutes or so and see if that makes things better. I’m betting it will

Most people don’t feel they really feel like themselves until 6 months or so. So, while it may be hard to understand, what you’re feeling is completely normal.

 

[beralc]

Thanks @Jamie one of the reasons I asked about the swelling was because I hadn’t experienced the sudden swelling that happened this morning. I’m not talking about standing for a long period at all, I could understand that, it was literally a couple of minutes. This is not what I had been experiencing when I was making good headway, that was the reason for my question.

Just to clarify the reason I’ve been on couch rest the past 6 days is one, because of the effects of anaemia, but more importantly that any seeming aggravation (as happened over the days last week when I attended my GP and the following day undergoing tests at the hospital) this caused a systemic inflammatory response (due to the autoimmune diseases I have) such that I wasn’t able to actually move around every hour or so and certainly not through the night and for no longer than it takes for simple activity. As you’ve said my body is telling me to stop if I’m feeling that tightening and is the very reason I’ve not been able to get up and about, so I was interested to know if anyone had experienced that feeling after only minutes. This is the third flare I’ve had since the surgery the first one being for 12 days immediately post op.

In between the episodes of being very unwell I’ve been very proactive with my recovery and movement/exercise I was doing extremely well,before I fell and set off another flare, then other things happened like the anaemia, which I clearly have had no control over.

In a sense my recovery from the actual surgery has been less difficult to cope with than the reaction my body has had to it. In case you thought I’m in a rush to heal, I’m under no illusions of the time it takes and I feel I’ve set a sensible course each time, given the hurdles I’ve encountered. Today is the first day I’ve been able to do anything other than the knee presses/quad tightenings etc.

 

[Jamie]

There is something to the gravity issue and swelling in your legs and feet. The lymph system, which is what removes excess fluid in your body, works very slowly. Lymphatic massage (there are professional massage therapists who know how to do this properly) can sometimes speed things up.

You’re right…I did not completely understand the context for your question and I can see why, if this was something new, it was a concern. Are you under the care of a rheumatologist for your auto immune disease? If not, what does your GP have to say about these flares? This is an area out of my knowledge or experience, so other than to tell you I know someone with autoimmune problems can suffer different reactions to surgery and recovery.

If this is something new for you to experience, I do think you need to get some answers from someone with a strong background in this medical issue. Here in the US that would be a rheumatologist, but I’m not sure about the UK. Perhaps @EalingGran may have more information on a type of specialist for you.

 

[EalingGran]

Standing was much worse than walking for me and my leg felt tight very quickly- even though I didn't have much visible swelling.

It would be a rheumatologist over here for RA and autoimmune disorders affecting joints just like in the US @Jamie . I presume you are under a rheumatologist @beralc? If things don't settle- can you see your RA specialist soonish?
Anaemia can also be linked to oedema and may well be affecting your tightness and making the gravity issues we all experienced post surgery much worse.

 

[beralc]

Yes I’ve been under a rheumatologist for 15 years. They have a helpline I rang today and hopefully will hear back from them.
To be honest it’s all going to come down to an individual’s response. Not everyone will react in the same way I have and some may be worse, so for the most part it’s a watching and waiting plan. I’m already on Methotrexate for my RA but have not yet been under the care of an endocrinologist for the autoimmune disease of the thyroid which I’ve had for at least 7yrs, but again we’re watching to see if the TSH and T4 (which have gone a bit haywire since surgery like many of my blood results),normalise once things settle down and look to refer me should the thyroid blood results not improve.
As no one has any idea how long any of this will take, it’s a bit of a guessing game and a case of watching and waiting.
I’m seeing the physios tomorrow and I’ll see what they think about where I am and whether they can offer anything in addition to help me.

 

[beralc]

Anaemia can also be linked to oedema and may well be affecting your tightness and making the gravity issues we all experienced post surgery much worse.

Interesting I wasn’t aware of this.

 

[Jamie]

I wasn’t aware of this connection either, @EalingGran ….thanks for the information and I’ll remember that now.

@beralc …. It does sound like you’ve got this under control as much as you can for now. I’m glad to hear you’ve got the right consultants on the job. Hope things improve with a little time.

 

[WFD]

@EalingGran , I wasn’t aware of that either. Do you have more information on that? Thanks.

 

[Oldped]

@beralc , sorry things are flaring up for you, I feel I know how frustrating these other issues are. No I haven’t had op on both knees, but strangely enough my other knee ( which has had some issues) has gotten more stiff/ sore since op probably because it has had to work harder. I feel like we can’t catch a break, it’s very annoying, we can’t just deal with one thing. I am now on med # 3 for UTI, #2 bothered my gut something awful, hoping it gets better soon. I just want to get off the couch and on with life!

 

[EalingGran]

Pathogenesis of oedema in chronic severe anaemia: studies of body water and sodium, renal function, haemodynamic variables, and plasma hormones - PubMed

In patients with oedema caused by chronic severe anaemia there is retention of salt and water, reduction of renal blood flow and glomerular filtration rate, and neurohormonal activation similar to that seen in patients with oedema caused by myocardial disease. However, unlike patients with...

pubmed.ncbi.nlm.nih.gov

It is more likely a feature of chronic severe anaemia but it is well recognised. It also occurs earlier in pernicious anaemia
The mechanism is not totally clear and not just simple haemodilution.

 

[beralc]

So thought I’d run this past you all. I went for my first physio appt since my surgery on January 10th.

The Physio was very sympathetic and realised it has been tough for me. He says I’m at 90 degrees and they want me at 110-120 within 6 weeks before talk of MUA.

He’s organising some targeted physio from next week and outside of that has given me the following exercises.
1.Morning and afternoon getting up from sitting down without the use of armrests 3x10 Reps. (He said that rather than increasing reps as the exercises become easier, add weight to increase.

2. Using a band under my foot lifting the leg onto a stool without swinging or compensating. So a straight lift up at flexion on top of the stool then off again. Bringing the stool nearer to increase flexion as a challenge.


He sat in front of me on a stair my foot flat on the stairs and he pulled my knee flexed towards him until I was in pain and breathed through for about 10 seconds. I did manage the 10 up and down squats which I was surprised about,but I did feel when I woke this morning that I’d really seen the worst of this particular flare and a bit more positive and moving better. I’ll need to wait and see how my body responds, but ok at present 6 hours later.

I think I know what you’ll think but will be interested to hear your thoughts. X

 

[mendogal]

If you tolerate it, ok.

I believe multiple sets per session are counterproductive.

For example the rising from the chair, three sets of ten reps each twice a day ... that's a lot. If you find you can do the exercise pain free, I would recommend limiting it to a ten reps, twice or three times a day. In my experience, even without having the inflammation issues you do, I fared much better dividing exercises into smaller more frequent sessions.

Same thing with squats: ten at a time is too many when you're not yet at 12 weeks where tendons and ligaments are healed. If they are pain free to do, try four or five at a time, with a solid chair behind you touching your leg to maintain good structure and not go too low.

On my first knee, with no exposure to BoneSmart, I let PT bend and stretch my knee and always suffered from it for two days after. It's not a hard and fast rule: six months or more after my second TKR I specifically went to a trusted PT knowing he would safely manipulate my leg. But yours sounds pretty gung ho.

BTW .... That 110 degrees at 6 weeks is pure nonsense. My surgeon's arbitrary goal for all patients was 90 degrees at six weeks. And that's not accounting for people with inflammatory issues.

The "window of opportunity" is a myth. Here's why.

Some of our members have shared charts of their progress regaining flexion. As you can see, for each, it returned slowly but surely.

Campervan’s ROM history
92 - 8 weeks post op
105 - 10 weeks
107 - 5 months
110 - 6 months
112 - 7 months
116 - 9 months
119 - 11 months
118 - 1 yr
120 - 1yr 2 months

Bertschb’s ROM history
2 months - 80 degrees
3 months - 85 degrees
4 months - 90 degrees
5 months - 90 degrees
6 months - 110 degrees
7 months - 120 degrees
8 months - 125 degrees
9 months - 130 degrees
10 months - 135 degrees
11 months - 140 degrees
12 months - 140 degrees

 

[EalingGran]

He said that rather than increasing reps as the exercises become easier, add weight to increase.

I really don't think weights or bands are a good idea early on.
I have had a great recovery ROM wise and I only started using weights and bands at about 5-6 months

He sat in front of me on a stair my foot flat on the stairs and he pulled my knee flexed towards him until I was in pain and breathed through for about 10 seconds

I also definitely don't think being pulled to pain is a good thing. I think thiscwill increase inflammation and tightness. My lovely pilates teacher never pulled or pushed my joint early on. She might give me a little push on my foot when I am doing a hip stretch now -with my leg crossed- but I am 2 years plus out from surgery. Her advice was always- if it hurts to stop doing it. You definitely don't need forcing to get great flexion.

 

[beralc]

Thanks. Sorry @mendogal I didn’t make myself clearer I meant I need to get to 110-120 in the next 6 weeks not at 6 weeks.
I agree @EalingGran whilst he was pulling the knee forward I was thinking this is exactly what I shouldn’t be doing. I sort of only allowed it because I wanted a measure of what I can/can’t do.

For the rest of your thoughts they are much what my husband and I thought about things yesterday. Going from 0 to 100 is a big ask in any new exercise regime, let alone after TKR. I’m amazed I don’t have any repercussions from yesterday which makes me feel very positive going forward.
But I am going to be very gentle with my body. I don’t want to chance initiating any more triggers for flares.

There were some contradictions in what he said. He actually mentioned the fact that muscles repair quickly but ligaments tendons etc take months, but then gave me strengthening exercises to do, which will have to involve those very soft tissues. Also saying slower is faster didn’t quite tie in with the advice. Anyway all in all feeling a lot happier and my body definitely feels like it’s settling down.
Fortunately my husband has been doing and then teaching martial arts for over 50years and is on hand and has a really good understanding of how training works and how to get the most without overloading. As you can imagine he’s had lots of injuries over those years so knows how to get the best recovery whilst going steadily and slowly.

Things definitely feel like they’re looking up. Thanks again for all the support and shared experiences girls

 

[westiemom]

@beralc

That's fabulous news! And so good that you aren't in excruciating pain today. Hope for all us slow going healers.

 

[beralc]

So uuuummmm I won’t be doing the 10x3 twice a day, up and downs from a chair unaided or anything close. It’s actually the left knee (arthroscopy in September last) that’s the problem.
I’m going to start off really small and do the minimum I can do and build from there. I think the problem with most Physios I see or have seen over the years, is the exercises no matter what it is for, are always a blanket approach. With something like a TKR especially with people who have the added problem of additional medical problems, there needs to be a much more tailored approach and I’ve only ever found one physio who did that. The plan needs to be a realistic one or it’s doomed to failure and just leads to frustration and can be very demoralising.

Luckily I have enough wherewithal plus the support here and from my husband to know I can take some of what they’ve suggested and work it to fit “me” and not the other way around. Otherwise a pretty good day.

 

[Andypandy]

@beralc I like your chosen approach, do what suits your body. I have always said physios "read off the cards", tick each one they have gone through. Without going into anything which is out of my field, but a very close friend of ours owns and runs his physio business and throughout his training years was not impressed with many approaches. My physio advised me you can use the arm rests when doing the sit to stand, again different techniques but we are in the same country, should all be the same. I will be quiet now. So, you carry on as you have been, you've done pretty good. I will be having an MUA on Friday, good conversation with my surgeon, think positive xx

 

[beralc]

@Andypandy I’m glad you’re feeling positive and have made a decision for the MUA. Let’s hope it’s the start of a new recovery for you.

I agree re physio. When I actually thought about the fact that the Physio’s expectations of me had come after I had discussed what’s been happening so far, it was such a leap. There was no gradual adaptation to starting off slow and increasing as able. No thought that I had an arthroscopy on one knee (that’s become steadily worse) and 3 months later a TKR on the other and that there would have to be a building up to that sort of exercise.
As a result I’m going to have to find my own way until I have more Physio having a swollen burning left knee now. Well at least I can say I’ve tried. I won’t have the same Physio next time so hopefully I can explain my limitations.

With Fibromyalgia as I’m sure some will know endurance for exercise is poor anyway, but as said, nothing was factored in, to accommodate personal limitations.

 

[beralc]

Just an update as to where I am. Since I saw the Physio last week I’ve started exercises that I can tolerate well, I’ve modified some they gave me and a lot is governed by how the left knee is tolerating things. Mostly I’ve just been getting up and “doing”. Adopting more and more of those daily activities that I’ve not managed before and slowly coming back to the land of the living.

I’ve been doing a bit of massage to encourage lymphatic drainage from behind the knee where apparently most of my swelling is and I believe as a result I have now managed 100 degrees of flexion. I know we don’t need to get too hung up on flexion, but the physio and surgeon most likely will. I can feel that the systemic inflammation has settled down a lot, so hopefully as long as nothing else comes along to trigger things I can now continue to push on.
I’m climbing stairs foot over foot slowly but normally now (holding on but not pulling myself up) walking indoors without any assistance and am mindful of every step as to form.
Feeling so much more optimistic and things are coming together, hopefully the worst is over. Exhaustion is probably my main hurdle now but that always follows any time I have flares and I’ve had multiple so that’s understandable.

So all in all a big change from even a week ago. Thanks as always for the support x

 

[EalingGran]

I’m climbing stairs foot over foot slowly but normally now (holding on but not pulling myself up) walking indoors without any assistance and am mindful of every step as to form.

That is brilliant. I couldn't do that for months after my PKR. Sounds like you are doing really well.