I thought I was onto something by leaving work 6 months ago to rest, and I did manage to identify a lot of triggers I never suspected in that time (such as lifting the mattress a bit to make the bed each morning!) but unfortunately I have not improved simply by avoiding certain activities. My comprehensive knee diary isn't revealing any clear patterns at this point either. Interestingly, Coeliac Disease is looking increasingly likely in my case, as is the potential for my synovitis of the knees to be autoimmune in nature due to reacts to certain foods. Perhaps a change of diet will help.Amy, by the way, often drops in to comment here, and if you haven’t clicked through on the URL embedded in her name, you should. I remember the first time I did and thinking, “Wow, what’s this all about?” She writes a blog about her adventures in Africa with her husband, Austin Stevens, who seems to be part snake wrangler and part naturalist.
Anyway, heading down this autoimmune path to try to understand one’s knee pain feels very familiar. Maybe Amy will find that certain foods trigger problems; that’s possible. Or there could be a harder-to-pinpoint systemic issue; these can be frustrating to chase.
I originally wrote about the ghost in the machine here. I followed up here about a study that showed that, contrary to what you may have been told, osteoarthritis is not the noninflammatory version of arthritis (rheumatoid arthritis supposedly being the inflammatory and out-of-control variety). Inflammation was found in osteoarthritis joints well before changes appeared in X-rays.
Why is inflammation so important? Well, in its chronic form, it can be a very destructive force from what I can tell. I know that in my attempts to heal, I was always fighting to bring that burning flame to its lowest point. I wanted as little inflammation as possible and was able to modify my behavior to achieve that. Luckily, I wasn’t working at the time and had the freedom to experiment and adjust and could reach a safe zone that I then enlarged little by little over time.
Some people can’t achieve that through modifying behavior. So what happens when inflammation sets up long-term? This is a fascinating question with no clear answer. I do wonder if inflammation in the knee may be something akin to a dog of hell on a leash that, if it isn’t brought to heel, might escape and plague your whole body. I had too many odd joint problems along with my knee pain for this to be coincidental, in my mind. When I mentioned my theory to a family doctor, he kind of pooh-poohed the idea, but now I think he was dead wrong.
Why? Not just because of my own experience, but because of your experiences. Too many of you have shared stories that resemble mine. There is something to this malevolent inflammation genie. I’m convinced of it.
Food intolerances can definitely cause joint problems. My own mother developed rheumatoid arthritis in midlife as the result of a food allergy - salicylate, which ironically is found in many things, including NSAIDS.
ReplyDeleteIt took forever to track down, but she did manage to recover with a salycilate-free diet.
It's very interesting that your mother reacted to salicylates because I do too, and so does my sister. I react to an awful lot of chemicals that are naturally present in foods and some of these are definitely associated with an increase in joint pain in my case.
DeleteYikes. It's good that you've been able to narrow it down. I haven't noticed a pattern, but I also haven't done a systemic elimination just because it's such a huge project and I haven't felt up to it.
DeleteIt is a big undertaking, and one I doubt I would have got through it if weren't for the assistance of an experienced dietitian.
DeleteHere is a study that clearly suggest that pain/inflammation can spread because the signals travel back and forth from the source to the spinal cord
ReplyDeletehttps://www.sciencedaily.com/releases/2008/09/080929123935.htm
So it is not just intuition and common sense. All doctors who think we are built out of separate boxes called knees, kidney, liver,etc., which do not affect each other immensely can just eat their degrees.
I had a massive blast of inflammation that lasted in its active form more than half an year. I suspect the pain before that was just low grade inflammation following a small injury 3 years ago. What helped me with the worst times was diet, total rest for months and now meticulous step count. Now I am improving but I have some overgrowth in the joints and although my ROM is full, it is not clean.
I exchanged letters with Dr. Dye, who felt I may had had synovial impingement that perpetuated itself until I got on crutches for a month.
Another famous doctor in London suggested he gets inside the knees and excise my plicae to restore a near normal volume of the knees. According to him it will just feel sore some days afterwards. Another famous doctor in Munich, however, said he does not believe my problems are mechanical but fears an autoimmune issues, which may worsen if there is surgical intervention.
The Munich guy's English was not great and I do not buy entirely into his hypothesis because he did not spend much time talking with me and I can trace back my problems to injury. However, I feel he is partly right and autoimmune stuff may play some role in my journey. Actually in any journey that becomes chronic.
As far as I remember, Amy Stevens is having consultations with Dr. Dye and was considering synovectomy. If she fears immune problems I wonder what Dr. Dye says about that and will he risk to operate in such case?
Amy Stevens, if you read this I propose we get in touch to exchange information and experience about autoimmune problems&surgery. You can get my email from the other Amy over here. I think you are in contact with her.
Consequently, we can compare notes what experts think in the US and in Europe.
Peace to everyone struggling with their joints!
I have never been to the USA and so cannot comment on what US knee experts think, unfortunately. My only contact with Dr Dye has been via telephone and email and if I do undergo surgery, it will be done in Australia.
DeleteYou are spot on in your description of the way some doctors want to compartmentalise body systems. Unfortunately, in my experience, physiotherapists are similar in that they are far too focused on biomechanics at the expense of every other possible cause of knee pain, as Richard has so aptly described.
If you'd like to get in touch, you can reach me via the contact page on my website.
Richard, thank you for the recommendation! What a surprise. I've been following your written work for a couple of years now and I am happy to have been able to contribute in some small way.
ReplyDeleteOne of my personal 'ghosts in the machine' that I have recently identified (with the help of an Accredited Practising Dietitian experienced with the RPAH Elimination Diet/FAILSAFE diet) is the preservative potassium sorbate. I couldn't understand why taking tablets containing paracetamol and codeine for pain was making my knee pain noticeably worse until I switched to another brand of tablet that did not contain potassium sorbate, and my knee pain did not flare up. I waited until my knee pain had completely subsided and then tested my theory, and sure enough, the pills containing potassium sorbate (and all processed foods containing preservatives as well) cause a severe increase in knee pain and if I consume preservatives for long enough, I get pain in most of my other joints as well.
That's interesting. I'm taking a daily NSAIDs that Dye prescribed and I don't know if it has potassium sorbate in it.
DeleteI took Advil twice daily for 5 weeks until side effects caused me give up on it. Unfortunately, it did nothing to help my knees.
DeleteI thought I had better clarify my above statement 'until my knee pain had completely subsided' before knee pain sufferers everywhere get too excited - my activity is severely limited at present and those rare times I am without knee pain are times in which I am seated with my legs stretched out straight in front of me, resting. I did not mean to imply that I had found a 'cure' for knee pain in my avoidance of preservatives - merely that I had identified one of many triggers in my case. Another trigger I have identified is Advil (ibuprofen). I am definitely better off without Non-Steroidal Anti-inflammatory Drugs (NSAIDs).
ReplyDeleteOh yes, that ghost who haunts me every time I hurt some part of my body and my stress levels go up. I recently had a bad episode of facial neuralgia, a dormant annoyance of mine that decided to wake up all of a sudden. Stress activated. The stress generated by this triggered my knee once again. When it did, I shouted NO! And decided to do something about it. Went to see a hypnotist and after 3 sessions my pains were gone and my stress level under control
ReplyDeleteSadly, after months of being pain free in my knee and enjoying hikes and long walks I am back to square one. Not with my knee, thankfully, although this is also flaring up a little. My feet have gone south and both are affected by plantar fasciitis. Thankfully, I remembered the posts about Morton neuroma and I decided to grab the bull by its horns. I got rid of the orthoctics which were making things far worse, bought a pair of very sturdy walking shoes with good cushioning. Sandals from the same brand to wear at home. And while I decreased my activity level by 90%,I keep walking. A bit. Like at the beginning of my knee journey. A few hundred steps a day, distributed evenly through the day so I don't overdo it in one go and mostly don't stay seated for ages as this seems to make things worse. Water physio is again a life savior. If only to protect my knee from going bad too
As for the inflammation, I drink concentrated cherry juice twice a day, and am using wintergreen essential oil mixed with almond oil to massage
Hi Richard,
ReplyDeleteI do agree with your comment "I do wonder if inflammation in the knee may be something akin to a dog of hell on a leash that, if it isn’t brought to heel, might escape and plague your whole body"
My experience for example, having experienced chronic inflammation of my left knee for combined refractory enthesopathy and chondromalacia... After 2-3 in the rollercoaster pain wagon, I also developped tennis elbow (Elbow enthesopathy), Triceps tendinitis, achille tendon pain and brachoradialis pain (not all at the same time though)... For me too, that too much of a coincidence. But who knows...
You're far from the first person who has made a comment like that. I think chronic inflammation is capable of doing a lot of mischief.
DeleteI found the blog whilst poking around the internet about my knee problems. Started with my right knee and only noticed something was wrong when I went down some stairs - right knee felt like it couldn’t hold up my body weight. Thought maybe I pulled somthing in my leg and didn’t think much about it. Then on another occasion going down some stairs, my left knee felt the same way. Eventually my knees start to give out cracking sounds. That’s when I knew something is not right. Saw my GP and she said it looks like it’s wear-and-tear on the cartilage in my knees. She made me sit, put her hand over my knee and asked me to bend my leg upwards. That’s how she checked both knees and came to that conclusion. She prescribed glucosamine (I’ve been taking this for about a week and a half now) and said I won’t see the effects of that until consuming it continuously 3-6 months down the road. Along with that she prescribed some painkillers (which I haven’t had the need to take yet). She also suggests that I do leg exercises to strengthen the legs.
ReplyDeleteA day after seeing my GP, my left shoulder starts to make the cracking sound and also my left wrist. A few days later my right shoulder and wrist does the same. This starts to scare me. I don’t do high impact sports, I don’t do any heavy lifting. Both my parents don’t have what I’m having. That weekend I decided to go to the pool to do some light swimming and leg exercises in the pool. Don’t know if that helped. Anyway, the knees, shoulders and wrists continue to make the cracking sounds. Knees especially after I get up from a chair and take a few steps.
A fews days later, I go see another GP who is closer to home. He makes me do a series of bending of my joints. He hears my right knee crack. He explained that there doesn’t seem to be any inflammation in any of my joints. He also asked if there’s any history of rheumatoid arthritis in my family and to my knowledge, none. He decides to do a blood test - arthritis panel and ESR (to test on whether there are auto-immunity issues). That’s where I am now. Waiting for the results. *sigh*