On-going issues

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Hi folks,

Would appreciate some brainstorming on an on going situation I am trying to get under control.

I am trying to get on top off of recurring knee and ankle issues but it's difficult to break the cycle.

As context I've had 3 kneecap dislocations -- age 13, 16 and 24. The most recent, age 24, was about 2 years and 8 months ago.

After the first two I more or less recovered normally with some discomfort after, though after the most recent one it has been a challenge.

More recently, eg the past couple of years, I've had ankle problems that when combined with the knee stuff make it hard to get momentum on any kind of program.

The problem with the knee right now is that it is 8-10 degrees short of full extension and in each of the last 2 April's I've had incidents where it has blown up seemingly unprovoked (massive swelling and quad/hamstring stiffness). In both cases I really just woke up with it and have no idea what happened.

I had an MRI in Sept 2015 that was essentially clean -- no meniscus issues, which is what an experienced chiropractor had thought clinically presented during the April knee blow-ups.

I saw a sports doctor in June 2016 and received a cortisone injection into the knee that has had some decent short-term effect. The swelling is down and it is generally closer to fully functional, though the extension has not improved, which is a major concern. It is not pain or swelling free post-cortisone, but I feel that there are situations where pre-cortisone it would have been a lot worse, if that makes sense.

The real problem is the on-going ankle issues. The first major one I can think of was May 2015 -- I just developed deep pain and swelling, and was told I had sprained it, but I can't think of any incident where that could have happened.

Once that settled down I was able to get through the summer, fall and most of winter feeling decently. I did have an incident where one of the ankles was in rough shape in February or so, but again I can't think of a trigger incident.

Over the winter, January-February, I got back onto a good physio program and was making good gains in knee muscle mass and generally feeling better. Then in April 2016 the knee swelled up massively for no apparent reason and I was not doing much for a good couple of weeks.

Then, right as I was getting over that and thinking of getting back into physio on the knee, there was an ankle incident -- again, no obvious trigger.

I then received the cortisone shot in early June and things somewhat/mostly stabilized for a bit. Late July, I had -another- ankle incident that took a week or ten days to stabilize, most of August was fine, then most recently I went through a period of 5 or so days of doing a lot of walking (I was feeling great ironically) and the ankle issue happened again.

So you can see and understand why it is hard for me to get much momentum going on anything.

I would identify a couple structural challenges at this point to a recovery:

1) General muscle stiffness everywhere in my lower body makes it hard to start exercising without feeling really sore

2) Fear of exercising causing another flare up – if something nasty happens I can be almost nonfunctional for the better part of a week, which isn’t really practical. It holds me back from just jumping into an exercise program.

I am the first person to agree that this could have been much better addressed in my teens and early 20’s (now almost 27) and that my own laziness (I find exercise incredibly boring) is a major factor in why it’s gotten to this stage. That said, at this point I am constantly thinking of how and what I can do to get better, so I honestly believe that the barriers I describe above are real and not just me being lazy and coming up with reasons to avoid doing anything about it.

I have a couple advantages to work with here:

1) Day to day I am still more or less entirely functional unless an acute episode such as an ankle “sprain” (quotation marks because I can’t ever think of spraining them, despite the sprain-like symptoms!) or knee flare-up have hit me. So fortunately I am not as far gone as a lot of people could be.

2) I have the resources and job/life flexibility to access top notch physio care

My general ideas are as follows:

1) Possibly return to sports medicine doctor for an update on me knee and perhaps further treatment – he had suggested maybe trying Platemet Rich Plasma, a cutting-edge treatment that apparently can be effective for healing, if the cortisone didn’t fix things. Perhaps I could also ask about cortisone in my ankles to grant me a period of stability?

2) Intensive rehab – the problem is I need a facility and therapist who can work with me daily and see how I respond to different things – for example if a certain new exercise or kind of stretching causes a flare-up that incapacitates me for a few days, I need the person who prescribed that to see what happened and treat it and then adjust what I can do, rather than just treating the flare-up ad hoc and then trying to get back to things.

3) While I work at a desk and don’t have much physical strain at work, the issue of being out for 8-10 hours a day can feel like a burden if I am trying to get on a program and especially if I have a flare-up that needs a lot of pain management and treatment to get back to a place where I can be comfortable and start doing activities again. I think I am at a place in job/life where I could take a few weeks off to do nothing but physio and get things back on track.

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  • Posted

    Something you might want to explore is having some serology tests done to rule out any autoimmune illness, which I suggest only because you say these flare ups don't seem to always have an explanation.

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    • Posted

      RA can weaken all those structures.  It comes on as inflammation and wears it down.  My knee started filling with fluid and I had it drained several times.  Nothing obvious at the time.  Then pain started on the inside of the knee.  I ended up having bone on bone which required a TKR, because all the cushioning was gone.  Now I think that inflammation that caused the fluid retention was the beginning of the damage.  But there are aother diseassess that weaken connective tissue.   Serology would show if you have antibodies attacking your joints.  Good news is there are medications that stop that.
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  • Posted

    My suggestion is to go to your primary care physician and have a thorough exam. Make sure you get blood work done. It sounds like you have medical condition and this need to be addressed. Be blessed.
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  • Posted

    Hi - My initial reaction is to stop all impact exercise for at least a month and substitute with swimming in warm water. I have lived 45 years since damaging my ACL at age 14 with subsequent dislocation issues and have found water to be the most effective exercise when the leg is in crisis. It is a complicated amalgam of cause and effect the leg !!!

    Gentle swimming and maybe some Aqua aerobic type work is fantastic and will keep the leg strong without the stress.

    Alongside that I would visit a nutritionist or similar to see if you have underlying health issues. I have discovered very recently I have an auto immune condition which affects my joints - crazy !!!!

    I have been advised on some simple dietary changes plus some supplements to support my system. I have 3 weeks ago had a TKR after having had minor surgical fixes over the years.

    All the best I hope you can find what the root cause is a deal to it smile

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    • Posted

      I don't currently do any exercises because of the frequency with which stuff has flared up over the last year or so, so there isn't much to stop right now. 

      I love water-based stuff and never feel better than when I am able to be in the water a couple times a day (which is rarely). I am a city dweller and would need to figure out the logistics of accessing a pool that regularly. 

      Not sure what to make of the underlying health issue theory... obviously, I should be making an effort to rule it out at this point. I did have some blood work done a year or so ago that found high uric acid, but I honestly do not believe that it's gout that's causing me to have ankles injuries that present as sprains. 

      The funny thing is, there are times when I'll roll the ankle or something and think uh oh, I am really in for it now, and it's absolutely fine. 

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    • Posted

      It makes it so hard to feel positive. Autoimmune  has so many guises. Maybe do a google for the symptoms and see if anything rings a bell for you? It could be a way forward .

      Take care and fingers crossed you find a solution so you can enjoy all the  life you have ahead of you smile

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    • Posted

      Your mention of autoimmune caught my attention.....where does one go to get a good diagnosis of such?  A rhumatologist? Is there any bloodwork that could produce results?  I know these ailments are tricky to diagnose having lost a family member from one, too late to intervene. I have had decades of joint issues that no doctor has wanted to discuss.  One look at me and they all think I am healthy and wasting their time. I do have a miserable diagnosed diease of my knee joint and a miserable diagnosis of a spinal issue, but my over all bone pains fit no category that any doctor I have seen wants to talk about. How did you go about getting your condition considered by medical personnel?  (If you care to share)

      ​Thanks.

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    • Posted

      Serology tests find whether you have developed antibodies against connective tissue or against your own tissue.  It's a glitch in the immune system that shows up with a blood test.  Even a gp can order the tests but they don't like making the dignosis.  if they saw any positives they would refer you to a specialist like a rheumatologist..  

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    • Posted

      I was diagnosed with degenerative joint disease. I had to have My left great toe operated on in 2013 and just had TKR in July of this year. Mine was figured out through bloodwork, xrays, MRI and a decent doctor.
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    • Posted

      Hi - It is awful having these things that don't seem to be recognised by doctors until they are too chronic to deal with. I went to a registered nutritionist who had a raft of bloods done and then another lot after certain flags came up from the first lot. She als0  did a hair analysis which helped to pinpoint things. I have had no joy from doctors for various things such as exhaustion and in  ability to relax or sleep. They all tend to go for depression or women's issue lol - as the reason. The lack of energy to do anything was the most debilitating one and I was feeling like I was just a lazy bones.

      Now I know there is something else going on it has helped enormously and once I am up and running again so to speak I will be pursuing this to see if we can isolate what the condition I have is. Google will bring up a huge list of auto immune disorders and their various manifestations.

      I wish you well.

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    • Posted

      Thanks.  I like the nutrition approach.  Been trying things on  my own, but at my age, I don't know what is the optimum results I can get. My head is still 30 years old and my body is 80. LOL  But chronic pain is the one area I can't break through by myself.  Thanks for your input.

      Best wishes.

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    • Posted

      I am avoiding a TKR because of a genetic blood defect that would be difficult to stop bleeding in a knee surgery.  My spine and metatarsals in my feet are badly arthritic and degenerative.  Had surgery once on one foot, but it hemorrhaged, so I quit trying to fix the other one. I think that the philosphy in my medical center (USA) is that if it is genetic, Idiopathic, or unfixable because of your age, doctors just don't want to get involved. They can't turn back the clock so it is easy to pass on you.  Degenerative joint disease is a heavy burden to bear on a daily basis, particularly if one is not given a plan or meds to deal with it.  Thanks and best wishes.

      ?

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    • Posted

      Don't you suppose the medical community would be able to give you clotting meds so they could do the surgery?  If nothing else, massive doses of vitamen K.  The other thing is to draw your blood at feequent intervals and spin it down to take out the plateletes and then give you shots of concentrated platelte cells, (your own) to enhance clotting.

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    • Posted

      Right on!  When I was a young person,  after a wisdom tooth extraction, a dentist  gave me doses of Vit. K and it eventually worked.  Last year after a hemorrhage in my knee joint from a rare kind of tumor that bleeds, I got an ortho to give me platelet shots every 5 months and it kept the bleeding down.  Then the ortho changed medical facilities and when I went for my next shot, I was told that these shots don't work and the facility doesn't give them anymore. In the meantime, I went to my 3rd hematologist to try to find out what the heck was causing me a lifetime of bleeding.  He was a good detective and he found this genetic, a very rare defect, that he had never heard of before.  So when my source of platelet shots was terminated, I went back and asked him, what was I supposed to do when I was in a bleeding situation. (I had researched the clotting drugs available myself) He agreed that I should carry one of them at all times to administer myself when my knee blew up and it was apparent that it was a hemorrhage, but he just advised me to take one and then reminded me of the clotting features.  I assumed that should I ask for surgery on any part of me again, that I shoud advise the surgeon of this problem  and hope that he will contact that hematologist for furthur information. I need to find a good ortho surgeon whoo understands the disease in my knee that will require removing the whole lining to try to eradicate it and even then, the lliterature says that it is only a 50% cure. My hematologist sounded like he was unsure of how much meds to give me during a hemorrhage or extensive bleeding like in a TKR when the lining is scraped, cut, etc. because the blood defect is so very rare. I will have to hope that he and the surgeon will work together to get me through it. The rare part of the defect is that in my body, a clot will eventualy form and then dissolve after the surgeon is done. This dittos my history with previous surgeries.  So I am left with a lot of doubt and anxiety about allowing the TKR.  So far, I can walk with a heavy brace if I need it, and avoid all positions other than straight walking and knee forward and back only, no twisting etc. In the meantime, I am searching for an ortho who will take the time to understand the knee disease and my blood defect and actually care that I want to live and be mobile, albeit my age.

      ?I do so appreciate the time you took to write your ideas. This forum is the only relief I have. People who have been there and done that are the best advisors of nursing care and emotional help. Most of the white coats haven't a clue!

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    • Posted

      I truly feel for you. One thing I do take that I do believe works is fish oil. Nasty stuff off a spoon but it is so very good for inflammation and I am sure a reason why at 3 weeks post op my knee is only I inch larger than my up operated knee. It also helps with arthritic pain. 

      Maybe that would be a good first addition to research. Just remember all fish oils are not created equal smile

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    • Posted

      I knew about the vit. K from a dentist after he extracted a wisdom tooth and I bled so much and bruised down my neck.  After these doses, the second wisdom took came out without the bleeding.  I tend to bruise alot and always have bruising somewhere.  After the TKR I had solid purple on both sides of my calf and on the inside of inner knee as well as a the underside of my thigh where it pooled.  I am not sure I have what you have but I should have known to be taking Vit K beforehand, and it totally slipped my mind.  Some of the bruising will never completely clear up and I have permanent stains like a suntan.  What is your condition called?
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    • Posted

      Thanks Lynn,

      ?I have had a lifetime of bruising without memory of what I did to deserve it. Although I didn't have a TKR, the spontaneous hemorrhage in my knee caused immediate swelling of virutally my whole leg.  Hours later, the awful purple and red areas appeared from my hip almost down to my toes. Black areas appeared later.  I have some awful pictures on my phone to prove what happened. I can't imagine that a surgery on the knee could produce anything worse than that.  And remember that I had no meds to take care of the pain.  I stupidly choose to stay at home and deal with it because at that point I had no ortho to go to. The stains eventually disappeared,  but the swelling took another 3 months to go back to a new normal.

      ?The genetic blood defect is named PAI-1 Locus 4g/5g, (plasminogen activator inhibitor-1) which is gibberish for a condition in which I am in the middle position, that is, my blood will eventually clot, but then it will dissolve. If I were a 4g/4g or a 5g/5g, that  would be bleeding all the time or else clotting all the time. This is my layman's explanation. My hematologist is the head of the dept. and he took the time to visit the lab and prepare the vials for delivery to another state to their lab. Previously I had had 25 tests under a different hematologist who found nothing and was about to send me to a medical school  quite a ways from here and I resisted. Because I am old and getting cranky, I challenged him to take the problem on himself, by saying that he didn't get to the head of a department because he didn't know anything!  Don't take me on a wild ride to someplace else! He agreed to try and actually quickly discovered the path he would take to identify it. The case study he wrote on me is in the Annals of Hematology and Oncology. I was happy that he pursued it and what he wrote may help other people like me who struggled to make doctors take a look at what I thought was a big problem. Just Google or go to any rare disorders website and read all the risk factors for this defect.  I saw my father's family immediately in the risks listed. Thus I ventured to a cardiologist to follow up and will monitor for cancer. I saw myself on almost every page of that defect.   I wrote the doctor up for an award from our medical center.

      ?Even if you do not have that particular defect, you may have one pretty close to it and there are meds to use to control bleeding, but my hematologist was vague to how much and when to take them.  But I think he will kick in and research it if I tell him I need him for an upcoming surgery.

      ?Thanks a lot for the info you private messaged me.  I will certain look into that and am overjoyed that someone is working on an easier TKR for people like me. I will sleep better tonight just knowing that.

      ?

      ?Look into your bruising.  I waited too long to do it myself. And thanks loads for caring.

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    • Posted

      I like the nutrition approach to most health issues and a while back, I started using fish oils on my own, but recently, from what I read or heard, you need to use the right kind.  So I purchased a new bottle of cold water salmon oil from Alaska.  Is this the best kind to use?  I am looking forward to less arthritic pain. Chronic pain sure can ruin a person's day.

      ?Thanks for caring.

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