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Author Topic: PFPS - 1 step forward...10 steps back!!  (Read 848 times)

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Offline STRONG UK

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PFPS - 1 step forward...10 steps back!!
« on: July 18, 2018, 10:42:22 AM »
Hi to all..I have been reading this forum for a while now and feel I need to reach out as I seem to be hitting rock bottom with my struggle with PFPS. I feel very lovely, fearful and frustrated. I am determined to beat this but there are times like right now when it's hitting me left, right and centre which is affecting my physical and mental health.


I am 39, live in the UK and before my knee troubles started, have always been moderately active but for the past 3-4 years have only been swimming front crawl, 2km 4 times/week. This use to take me an hour, so moderate speed.


Last july I started getting some left hip pain manly in the evening when sitting down in front of the tv...daytime was ok. Went for some PT, she said it was most likely piriformis sciatica, gave me some hip ex's and it went after 4 months. At the same time my left shoulder started giving me very mild pain which I put don't to altering my stroke to allow for less leg work when swimming. This resolved too. It was roughly at the same time, my left knee started hurting on kneeling and descending stairs, but it was so sporadic and the pain never lasted. Months went by and in March this year I started feeling some 'scratching' on the lateral left knee which progressively got more frequent. Went to a different PT, he examined me thoroughly, made me do one leg lunges, meniscal tear test, on the bed/off the bed, and made me do squats on tip toes and hills (this hurt at the time)...he concluded my knee was fine but that I had some left glutes weakness and gave me 4 exercises. I did this diligently for 4 days and then I couldn't walk any more. Left knee swelled up and the right one joined a week later. Swelling lasted about 6 weeks, it was on the upper patella band and I could hardly walk during this time. I was housebound for about 10 weeks. When the swelling subsided, the pain really kicked in....now 14 weeks in I am able to walk and walk about 2 miles daily and move around in my house ok...but always with symptoms. Sometimes walking feels absolutely normal but symptoms can come on within an hour.
There is mainly a feeling of fullness/heaviness, pain on the fat pad and around the knee cap, sometimes sharp short pain inside knee cap, clicking on flex/extend and initially there was grinding if I put my hand on my knee caps but that seems to have subsided now. The fat pad pain comes on when walking, sitting down and I cannot stand still for more than 1-2 minutes in one place...the knees feel like I have lead weights around them pulling me down and it hurts a lot!! Lying down rest helps but every morning I still wake up with symptoms. My sleep is affected. I get occasional muscle twitches. I am unable to do the straight leg raisers ex's as they seem to hurt the fat pad area even more. 

X ray normal
MRI on left knee all normal
Bloods including inflammatory markers all came back normal (repeated after 8 weeks - and still all normal)


Following all tests/scans being normal, the MSK lady said it's patella irritation and that it will settle with time. She said most like due to bio mechanical cause (I have normal gait) so not told exactly what....told me to keep on walking, rest, attempt ex's when able to, take anti-inflammatories when needed. I was on Diclofenac and Diazepam for 2 weeks and will speak with my GP if I can continue these as following them I was able to start walking outside. I was feeling that the inflammation was improving somewhat (even though MRI showed no inflammation).


The past 2 days the pain has been more intense...I have been off meds for a week now.


I have read Richard Bedard's book (several times over and over again), and have also read Dr Dye's research and have been keeping within my knee's EOF (although most days it would seem it's none existend). Would it worth contacting Dr Dye for an opinion (given I am not in the US) and would anyone have his contact details to give me?


I am going through a very challenging time and I am trying not to lose hope. I am hoping through posting on here and joining your community will help me get though this and come out the other end with my sanity intact.


I appreciate you reading this and your input...am I missing someting / can I add anything to aid my recovery? It is greatly encouraging reading @suspectdevice story and some others that achieved a full recovery.


Thank you all

Offline BusterCatLegs

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Re: PFPS - 1 step forward...10 steps back!!
« Reply #1 on: July 18, 2018, 11:35:18 AM »
Hi there,

Very sorry to hear of your struggle. It is endlessly frustrating.

First off, why did your doc put you on diazepam? I am so tired of doctors medicating people with addictive drugs for no reason. So diazepam is valium and is a benzodiazapene with a very long half life. It is extremely physically addictive. I would not take this anymore. It has a muscle relaxant quality but it is not going to solve any of your problems. You could definitely experience mild withdrawal symptoms even after a few weeks that will basically show up as anxiety. Which in this situation is horrible! As a person who formerly was addicted to this very drug a long time ago I would stop taking that immediately. If you are in severe emotional stress ask for xanax which has a shorter half life and don't take it often. If you want a muscle relaxer because your muscles are tight and hurting your knee you might want to take flexeril or something like that. Also addictive, don't take often. I just don't see why docs add more problems on top of those that already exist!

As far as Dr. Dye I have an appointment with him next week. It is a phone consultation, I live in NYC. It is $750 and I consider it money very well spent (well, that remains to be seen). But why wouldn't I want to at least speak with the leading expert on this?

After a talk with my other rehab doc yesterday I think that the less medical intervention you can get away with the better. And this may mean months of healing unfortunately. I have quit my job and basically given up my life to deal with this crap. I haven't been given much of choice as I have had severe inflammation- 20 days after a corticosteroid injection that I had maybe 7 weeks into PFPS pain and things cleared up. I took a bunch of stairs 5 days later and things came roaring back. Another 17 days of inflammation and near total rest and I am just starting to move and stretch again.

I think putting more stuff into your knee is usually not the answer. My rehab med doc also said there is no point to doing PT while you have burning pain/inflammmation so this is no good either. That seems to just leave rest. Unfortuantely I'm not sure what else to say exactly....

Massage has helped me a ton, I found a great woman who spends about 30 minutes on my legs without digging too much into the knee. I have always felt so much better the next day and the inflammation has been reduced the day after. That may be coincidence but it can't hurt to try.

My current goal is to try and do gentle exercise and avoid flaring the knee. And see what happens.

Keep us updated with your story!

Offline STRONG UK

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Re: PFPS - 1 step forward...10 steps back!!
« Reply #2 on: July 18, 2018, 02:42:10 PM »
Hi there - thanks and yes it's incredibly frustrating dealing with poorly knees. I think I am going thro a flare up with increased pain and anxiety. Regarding the Diazepam, I actually asked for them as I previously was given that drug combination which helped a lot, so hence I asked for it again. I have to say it has been very good, but my GP was only happy for me to take them for 2 weeks max and that time is up now. Been off meds for 7 days now and hence pain levels are increasing and it's affecting my sleep as it's difficult to get comfortable.
Spoke to my GP and have agreed to take Ibuprofen and only to take Diclofenac on bad days. She recommended Gabapentin/Pregabalin...do you know anything about these drugs?

Good luck with your appointment with Dr Dye, you are so lucky to be able to ask him for opinion as you're in the states. Let me know how it goes. I have had poorly knees acutely since April and although it doesn't seem like a long time in comparison with other people's struggles, it's totally wearing me down. I too have had to put work on hold as can't drive at the moment so being stuck at home all day obsessing about knees and pain is not healthy for me at all.

Keep in touch
« Last Edit: July 18, 2018, 02:45:12 PM by STRONG UK »

Offline vickster

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Re: PFPS - 1 step forward...10 steps back!!
« Reply #3 on: July 18, 2018, 06:57:07 PM »
If you want a UK based PFS expert opinion, you could see Clare Robertson in London. Sheís a Consultant Physio who receives referrals from other Medical professionals. Based in Wimbledon, charges around £200 for an initial consultation. Very thorough and personable

http://clairepatella.com/about-claire/

Iíve taken gabapentin and pregabalin, the latter was more effective for night time pain but it killed my short term memory so stopped after consultation with rheumatologist. Gabapentin similar but older drug

Celecoxib is as effective as diclofenac with fewer side effects (I thought U.K. GPs had stopped prescribing diclofenac?)

Good luck
« Last Edit: July 18, 2018, 07:41:25 PM by Vickster »
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline BusterCatLegs

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Re: PFPS - 1 step forward...10 steps back!!
« Reply #4 on: July 18, 2018, 08:17:59 PM »
I am also 39 and also have been dealing with this since April. The NYC specialist I saw (Shubin Stein) suggested I see a pain doc and go on gabapentin or Lyrica. This is a drug that modulates voltage gated calcium channels. There are definitely some pretty crazy withdrawals when coming off large doses and some kinda crappy side effects that can occur. It's all really a trade off though. I mean, I was able to wean myself off of valium over a 5 month period about 5 years ago and although I was extremely uncomfortable and anxious I managed it. If you think gabapentin is worth it just try and take a low dose and be aware of what you are putting into your body so you know what to expect.

Who knows, in a few months I may get sick of this experience and want to take something as well. I just hate it when doctors shove pills down your throat without telling you the real risks associated with their use.

My other doctor, Dr. Gellhorn, suggested I not take any of this stuff unless I absolutely need it. It can be very easy to develop mental dependency on drugs when you are sitting around miserable and bored.

Hang in there and good luck.

Offline STRONG UK

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Re: PFPS - 1 step forward...10 steps back!!
« Reply #5 on: July 19, 2018, 08:54:10 AM »
@VICKSTER - thanks for the info, I will look into it...

Yes, my GP  mentioned they were coming away from Diclofenac and also said that Celebrex (Celecoxib) has been banned in the UK some time ago?!? I'd never heard of this drug before so wasn't aware of this.

Offline STRONG UK

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Re: PFPS - 1 step forward...10 steps back!!
« Reply #6 on: July 19, 2018, 08:58:33 AM »
@BUSTERCATLEGS - what a coincidence, same age and same onset of this hideous syndrome. Your second Dr has a very valid point in terms of don't take it unless you absolutely need to.



Offline vickster

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Re: PFPS - 1 step forward...10 steps back!!
« Reply #7 on: July 19, 2018, 09:55:28 AM »
Certainly not banned (I've been taking for about 18 months, shoulder surgeon prescribed originally, then GP and rheumatologist also in favour). although other Cox 2 medications were. It does have contraindications similar to diclofenac (heart conditions, gastric issues). Similar to diclo but much gentler on stomach (I do still take omeprazole with it as chronic use, my GP won't prescribe without).

It's not widely used, pharmacy usually needs to order in the quantities I get, but certainly accessible. Works better for me than naproxen which is another NSAID
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline STRONG UK

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Re: PFPS - 1 step forward...10 steps back!!
« Reply #8 on: July 19, 2018, 06:47:39 PM »
Hi Vickster - I am assuming you're in the UK too? I Celebrex any better than Diclo for pain relief and reducing inflammation or pretty much the same? I remember from past experience Naproxen did not work great for me either.

Offline vickster

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Re: PFPS - 1 step forward...10 steps back!!
« Reply #9 on: July 19, 2018, 08:30:45 PM »
Iíve not taken diclofenac for years. Always made me feel a bit sick. No side effects with the Celebrex taken with the omeprazole
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up















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