Arthritis and Patellofemoral syndrome

[Tay]

I've been having knee pain for 6 years, I'm 31 now. I've had a lot of sleepless nights in agony. It feels like my life is over. Most days I'd rather not have legs, they're useless to me. Skateboarding and pulling double shifts at my manufacturing job was my life for 15 years, it got so bad I had to quit and take up cycling and get a stay at home job. But I can't even ride my bike anymore. Over the last ten months, it's been debilitating. At first, I was diagnosed with patellofemoral pain by four doctors. I had several MRIs which showed little to no joint space narrowing. In my most recent MRI, my doctor diagnosed me with mild arthritis with joint space narrowing. I'm having a hard time differentiating arthritis pain and PFPS pain from each other.

It only hurts around my knee caps, but my god does it hurt. I wasn't able to walk right for six months, if at all. Recently I'm back to walking about two miles a day, but it kills. I can't bend my knee past 110 degrees without excruciating stabbing pains. Is this from the PFPS or arthritis? I asked my doctor and he kind of hem and hawed. He thinks the fact that I'm a woman (evidently we have sh*tty knees by default?) with a family history of knee replacements, means I'm kinda just... screwed. He also said that most people don't even feel mild knee arthritis, but some do. I can't make heads or tails out his diagnosis.

Anyways sorry for the tangent, but it feels cathartic. If my PFPS clears up, will I be able to ride my bike again? I just want to be able to ride my freaking bike...
 

[Brandon123]

Sorry to hear about your struggles, Tay. Do you know which compartment of the knee joint the doc said had mild arthritis? Medial, lateral or patellofemoral? In my experience, telling arthritis pain and PFPS pain apart from each other is really difficult. Also, I think at least arthritis gives symptoms very similar to PFPS. Check the posts on the forum by @suspectdevice. He has made a good job trying to describe his difference in experience of pain/symptoms between chondromalacia/patellofemoral arthritis and PFSP. Lastly, why some people have massive symptoms (like myself) from arthritis (even mild) and other's don't is somewhat of a mystery in the orthopedic community. But the best explanation for this I have seen so far comes from Dr. Lars Blond and can be found here: https://www.kneeguru.co.uk/KNEEnotes/articles/expert-views/2017/why-do-some-patients-experience-osteoarthritis-pain-changes-are

Keep us updated on how the situation develops!

[Tay]

Thanks for your response Brandon, I appreciate it! I have tricompartmental joint space narrowing, but evidently it's not so bad on my patella, which most of my pain comes from. Thanks for linking me to Suspectdevice, it really helped me better understand my condition.

Oh and I figured someone else browsing the web might find some things I've tried useful. I know it's all anecdotal evidence, which isn't worth much, but anyways...  I wasted over a grand on peptides from Tailor made compounding. TB-500 and BCP-157 did nothing but mildly reduce inflammation. I've tried MSM, glucosamine, strontium ranelate, tumeric extract, garlic, Pentosan polysulfate sodium, Celebrex and diclofenac cream. The only medication which seemed to do anything at all was the pentosan, Celebrex and diclofenac cream. It seems like the more I read the more I realized how screwed am I.  There are no good disease-modifying drugs, and it doesn't look like everything coming down the pipeline is going to get past phase 3. 

[vickster]

Have you seen a musculoskeletal rheumatologist about your issues with inflammation.
I suffer with inflammation and stiffness in a number of joints (some with arthritis and on and off other connective tissues) and I’ve been taking a mild DMARD for a couple of years which seems to help with symptoms. I also take Celebrex (not every day, and always with omeprazole) and I also use the 2.32% Voltaren daily as and where needed as advised by rheumatologist. I supplement with Vitamin D, a high dose of Omega 3 and a multivitamin (as I stopped eating meat 6 months ago)
 (I’ve had the odd course of steroids too but those are best avoided due to potential side effects)

My bloods tend to show up as normal but clearly I’m prone to inflammation, such as tendinitis.
There are various food stuffs that are inflammatory too, meat and sugar for example.

It’s pretty wearing but mostly manageable!

[SuspectDevice]

The only medication which seemed to do anything at all was the pentosan, Celebrex and diclofenac cream. It seems like the more I read the more I realized how screwed am I.  There are no good disease-modifying drugs, and it doesn't look like everything coming down the pipeline is going to get past phase 3.

I sympathise, I've been though this nightmare too.

Do your knees get a hot, burning, tingling, stiff sensation as well as the stabbing pain?  If so, it could be the loss of tissue homeostasis Dr Dye describes (i.e. chronic inflammation of the synovial lining & perhaps other structures).  The fact that the drugs in your quote above helped makes me lean towards this diagnosis, combined with no problems found on your MRI.

If that is the case, read/watch his material - 2 good starters here:

http://aoj.amegroups.com/article/view/4438/5056

https://www.youtube.com/watch?v=jGLisqHx8sM

If this is your issue (it was my main problem), it is a long road taking much patience, but it can be improved dramatically.

[Tay]

Hey Suspect and Vickster, thanks for writing!

They did find JSN and tore up cartilage on my last MRI, but the first 3 MRIs looked healthy. If feels like little critters are trying to gnaw their way out of my knee caps, and yes, it's often a hot feeling sensation. There are also random stabs of pain that makes me an insomniac.

When I finally got sick of my crappy knees about ten months ago, I went to see an orthopedic surgeon, he recommended physical therapy. When I arrived, my physical therapist had me do a bunch of weighted incline squats (I guess she thought it was tendonitis). When the session was over, I could hardly walk out of the building. That's when things went from annoying to horrible. I didn't know about tissue homeostasis, but it totally makes sense in retrospect. I read a lot of Dr. Dye's work particularly on the merits of resting, and I think doing next to no PT actually helped me more than gentle PT at home every day.

I haven't seen a rheumatologist yet. Don't they primarily help patients with rheumatoid arthritis? My only bad joints are my knees (and an ankle I broke twice). Doesn't RA usually start in the hands and feet? Should I get tested for RA or some kind of inflammatory blood markers? I know they recommend a plant-based diet for RA, but I've been vegan for four years, and before that vegetarian. But I haven't felt any different since abstaining from animal products. I'm kinda at a loss here, I never drink or take drugs, and always ate healthy... I don't understand, there's people I know who are in their 50's and still skate or ride 20,000 KMs a year. And here I am going downstairs on my butt. 

[vickster]

My rheumatologist treats all manner of inflammatory, joint and connective tissue conditions. Not just RA at all, OA, fibromyalgia etc. He’s an MSK specialist and treats a lot of patients pre and post surgery. I don’t have RA, but certainly an inflammatory OA he thinks. I’m 47, tri-compartment OA in one knee (likely triggered by trauma but I come from a crappy joint family too), wear and tear in the other, wear in one shoulder, OA in my foot and degeneration in my neck. Ortho surgeons only look at one joint, rheumatologists much more holistic.

If you’re vegan, do you get frequent blood tests for B12, iron, magnesium, vit d etc as deficiencies can be an issue. If not, get anfull set of bloods including CRP, rheumatoid factors, just to rule other things put not least.
Do you get omega 3 on your diet (I’ve been taking daily cod liver oil for a few years). The rheumatologist has rightly told me to lose weight but never to change my diet. I eat fish, seafood, dairy, eggs. I just went off the taste and texture of meat about 6 months ago, no other reason for stopping!

Are you in the US? Could you directly consult with Dr Dye if it is more a PFS issue?

[SuspectDevice]

Hey Suspect and Vickster, thanks for writing!

They did find JSN and tore up cartilage on my last MRI, but the first 3 MRIs looked healthy. If feels like little critters are trying to gnaw their way out of my knee caps, and yes, it's often a hot feeling sensation. There are also random stabs of pain that makes me an insomniac.

When I finally got sick of my crappy knees about ten months ago, I went to see an orthopedic surgeon, he recommended physical therapy. When I arrived, my physical therapist had me do a bunch of weighted incline squats (I guess she thought it was tendonitis). When the session was over, I could hardly walk out of the building. That's when things went from annoying to horrible. I didn't know about tissue homeostasis, but it totally makes sense in retrospect. I read a lot of Dr. Dye's work particularly on the merits of resting, and I think doing next to no PT actually helped me more than gentle PT at home every day.

I haven't seen a rheumatologist yet. Don't they primarily help patients with rheumatoid arthritis? My only bad joints are my knees (and an ankle I broke twice). Doesn't RA usually start in the hands and feet? Should I get tested for RA or some kind of inflammatory blood markers? I know they recommend a plant-based diet for RA, but I've been vegan for four years, and before that vegetarian. But I haven't felt any different since abstaining from animal products. I'm kinda at a loss here, I never drink or take drugs, and always ate healthy... I don't understand, there's people I know who are in their 50's and still skate or ride 20,000 KMs a year. And here I am going downstairs on my butt. 

I didn't get the random stabs, and x-rays showed no joint narrowing, but I did have quite bad patella chondromalacia (which is really no longer a problem - I healed it!). But the hot knees & PT impact still makes me think the Dr Dye path is the way to go.

Dr Dye is retired now I believe, but his approach is not rocket science (well, it sort of is as the rest of his profession are so eager to resort to the knife, but it's a pretty simple concept). It just takes an incredible amount of patience.

I was just like you.  i'd watch older people & esp young kids jumping around with joy & think "my God, I'd give anything to get back to that state".  I never really did, but I'm so, so much better, if this is as good as it gets, I'll take it!

[vickster]

Not sure if he’s retired. He’s still on the clinic website as accepting new patients?
https://www.sutterhealth.org/cpmc/find-doctor/dr-scottf-dye
(They may of course just need to update)

[Tay]

Dr. Dye is a long drive away from me. I'm going to try and get a referral to him. According to his website, yelp and google reviews he's not retired. Although he's only practicing a couple of hours a day, four days a week.

I get a blood test every six months, supposedly I've never been deficient in anything. I also eat a lot of flaxseed, walnuts and take omega 3 supplements. Imma ask for a CRP and RA test. Thanks for the suggestions Vickster.

Oh yeah Suspect, have you had an MRI? I know it took you seven and a half years to get better. Were you riding your bike during recovery? I'm thinking about swapping out 175mm cranks for 165mm and do some really light spinning. It's probably a bad idea though?

[SuspectDevice]

Oh yeah Suspect, have you had an MRI? I know it took you seven and a half years to get better. Were you riding your bike during recovery? I'm thinking about swapping out 175mm cranks for 165mm and do some really light spinning. It's probably a bad idea though?

I've had several MRIs before all my problems started.  They showed patella chondromalacia & the medial meniscus tear in 2012, which was trimmed, and then my 7.5 year nightmare started.

I tried riding again several times during that period, but it only made things worse until I got on the Celebrex.  I did do a 3 day very easy cycling tour in NZ which was fine, but any time I tried to return to even 50% of my previous cycling intensity, I ran into problems.

Not sure about crank length, I've never played with mine.  I do find MTB is better than road in general as you are not pedaling constantly - more freewheeling on the downhill bits.

[kawi_girl]

Hello Tay!

Just thought I’ve give this thread a bump and ask you how you have been doing. My struggles seem similar to yours.

[Tay]

Hello Tay!

Just thought I’ve give this thread a bump and ask you how you have been doing. My struggles seem similar to yours.

Hi Kawi. I've been doing a little bit better. The pain around my knee caps subsided somewhat, but it's been replaced with a stiff painful feeling (I guess it's arthritis). I started riding again every day, easy, for about two hours. A car hit me doing an illegal u-turn. My right knee swelled up, and it seems to be worse off after the swelling and bruising went away. The left one is noticeably better though, so that's something.

[kawi_girl]

Good grief I’m so sorry to hear about your mishap with the car! Did the driver even stop for you? Any legal action on your part?  I sure hope you recover from that.

As for your journey to heal your knees in general, good to hear the left one is noticeably better. Oddly, my left one is the better of the two as well. If only my right were the same! I think I’ve still been making progress. It seemed I took a bit of a step forward after I got my customs orthotics, so maybe they are actually helping.

Sure is slow going isn’t it! I am still avoiding stairs as much as possible, and bumming my way up and down the ones at home!