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Author Topic: chronic PFS- need advice, feel I've tried everything  (Read 4274 times)

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Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #90 on: April 11, 2018, 07:04:31 PM »
Brief update: I know I'm writing a lot but I find it helpful to document some successes. So instituting my plan of very gradual increase in activities (like 5% increased step count per week, use of BFR, minimal gentle physio on the good leg) I've been waking up pain free (0-1) and continuing with long periods of 0-1 resting pain. This is a huge success for me. I do get frustrated and wonder if I should push myself but for me the slow and steady approach seems to be the only one that works.


Keep on posting! Some of us out here are following your progress and hoping to replicate.!   Question... how did Dr Dye explain to you as to how you know when to start increasing your step count... do you have to be pain free?  Also, does the lack of muscle work cause your thigh muscles to get all crampy?  and if so what can you do about it (I see the BFR posts and will check that out, carefully). I would go see Dr Dye but no way can my knees stand the travel (other side of the country from me).  So hoping to pick up tips from those who have.

Offline adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #91 on: April 12, 2018, 07:26:21 AM »
Brief update: I know I'm writing a lot but I find it helpful to document some successes. So instituting my plan of very gradual increase in activities (like 5% increased step count per week, use of BFR, minimal gentle physio on the good leg) I've been waking up pain free (0-1) and continuing with long periods of 0-1 resting pain. This is a huge success for me. I do get frustrated and wonder if I should push myself but for me the slow and steady approach seems to be the only one that works.

Regarding BFR training, did you started it on your own or did you have a PT or doctor showing you how to do it safely and properly? I'd like to try it, but cannot find anyone in my area who does it and have no clue what's the best equipment and how to use it

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #92 on: April 12, 2018, 06:45:15 PM »
You can actually schedule a phone consult with Dr. Dye, as he corresponds with knee sufferers around the world. I do find my knee muscles cramp with physio moves. You can try ball rolling/foam rollers, magnesium spray or hot baths or a hot pack for that. I would be more worried about joint pain as opposed to muscle pain.

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #93 on: April 12, 2018, 06:47:51 PM »
I am just doing it on my own with something I got off of amazon because my physio had never heard of it, it seems to be a new thing in the physio world. But again I can't advise as to its safety though I seem to be tolerating it fine.

Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #94 on: April 12, 2018, 07:08:16 PM »
Increasing your step count should be done based on gradually increasing your envelope of function-there is no set protocol because only you re attached to your nervous system. I can tell you what I'm hoping to do.  I got a pain app called "My Pain Diary" and a fit bit. I track my pain once a day. If my pain was consistently in the green zone I would consider increasing my EoP by say 5-10% of my total step count per week.

Offline adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #95 on: April 12, 2018, 07:24:51 PM »
Increasing your step count should be done based on gradually increasing your envelope of function-there is no set protocol because only you re attached to your nervous system. I can tell you what I'm hoping to do.  I got a pain app called "My Pain Diary" and a fit bit. I track my pain once a day. If my pain was consistently in the green zone I would consider increasing my EoP by say 5-10% of my total step count per week.

I haven't followed all of your posts, but if I understand correctly you had synovectomy performed by Dr. Dye?
Was it you that pushed for it or is it something that some OS routinely do for PFS?
Is it done in arthroscopy?

Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #96 on: April 12, 2018, 07:35:52 PM »
Increasing your step count should be done based on gradually increasing your envelope of function-there is no set protocol because only you re attached to your nervous system. I can tell you what I'm hoping to do.  I got a pain app called "My Pain Diary" and a fit bit. I track my pain once a day. If my pain was consistently in the green zone I would consider increasing my EoP by say 5-10% of my total step count per week.

I track steps and pain too.  What exactly do you mean by "green zone"?
Yes, one of the many hard parts of this is all the decision making one must do. And the pain one suffers when a wrong decision is made.  Wish I could off load some of that to a PT.

Offline Geronimo

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #97 on: April 13, 2018, 02:27:47 AM »
you can easily measure your pain level by number of steps.


Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #98 on: April 13, 2018, 08:36:26 PM »
You can actually schedule a phone consult with Dr. Dye, as he corresponds with knee sufferers around the world. I do find my knee muscles cramp with physio moves. You can try ball rolling/foam rollers, magnesium spray or hot baths or a hot pack for that. I would be more worried about joint pain as opposed to muscle pain.
Ok, I have a long distance appointment with Dr Dye scheduled.
In my favor: my knees have never been hot, red, or visibly swollen. I also know a lot of what they don't like. (most anything), I can take time off work soon
working against me: its both knees, I am a 50yo woman, my mental health is terrible because of this, muscle wasting and associated discomfort, I live alone

I think I may try to make a habit of posting once a week or so if there is anything to say.

Question.. I have noticed as the joint pain lessens some they feel more tight around the kneecap.... is this a good thing?


Offline reader278

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #99 on: April 14, 2018, 03:20:34 PM »
I have had PFS for 2 years, made some big mistakes along the way that caused a big flare-up last summer. Got some injections that made the pain worse, synovectomy is something my OS does for PFS, however it's more for severe cases that dont improve with physio and I'm not sure yet if it worked. My mental health has also been really affected by this damn condition. One thing also I have been doing- for those who can't tolerate physio-get an EMS/TENS machine. I am using it on my glutes and core. I'm too afraid to use it on my quads for fear they'll pull on the kneecap, but will try other areas of my legs. It's a way to maintain muscle strength and stave off muscle wasting. It may also improve strength and muscle functioning. Green zone means pain in the 0-2 range.

Offline adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #100 on: April 15, 2018, 08:16:50 AM »
You can actually schedule a phone consult with Dr. Dye, as he corresponds with knee sufferers around the world. I do find my knee muscles cramp with physio moves. You can try ball rolling/foam rollers, magnesium spray or hot baths or a hot pack for that. I would be more worried about joint pain as opposed to muscle pain.
Ok, I have a long distance appointment with Dr Dye scheduled.
In my favor: my knees have never been hot, red, or visibly swollen. I also know a lot of what they don't like. (most anything), I can take time off work soon
working against me: its both knees, I am a 50yo woman, my mental health is terrible because of this, muscle wasting and associated discomfort, I live alone

I think I may try to make a habit of posting once a week or so if there is anything to say.

Question.. I have noticed as the joint pain lessens some they feel more tight around the kneecap.... is this a good thing?

How much is Dr Dye's fee for a remote consultation?

Offline adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #101 on: April 15, 2018, 08:24:46 AM »
I have had PFS for 2 years, made some big mistakes along the way that caused a big flare-up last summer. Got some injections that made the pain worse, synovectomy is something my OS does for PFS, however it's more for severe cases that dont improve with physio and I'm not sure yet if it worked. My mental health has also been really affected by this damn condition. One thing also I have been doing- for those who can't tolerate physio-get an EMS/TENS machine. I am using it on my glutes and core. I'm too afraid to use it on my quads for fear they'll pull on the kneecap, but will try other areas of my legs. It's a way to maintain muscle strength and stave off muscle wasting. It may also improve strength and muscle functioning. Green zone means pain in the 0-2 range.

Was it something specific that caused you the big flare up?
When will you likely see if synovectomy had success or not?

I have bought myself a EMS and used it on the quads, two patches on the VMO and two on the biceps femoralis. In my case it definitely helped and actually I was feeling relief from pain after the session. I used one of the strength programs.

However my PFS may be different because the pain and burning for me increase with prolonged sitting and immobility, whereas it's relieved by walking and stretching.

Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #102 on: April 15, 2018, 07:03:01 PM »
You can actually schedule a phone consult with Dr. Dye, as he corresponds with knee sufferers around the world. I do find my knee muscles cramp with physio moves. You can try ball rolling/foam rollers, magnesium spray or hot baths or a hot pack for that. I would be more worried about joint pain as opposed to muscle pain.
Ok, I have a long distance appointment with Dr Dye scheduled.
In my favor: my knees have never been hot, red, or visibly swollen. I also know a lot of what they don't like. (most anything), I can take time off work soon
working against me: its both knees, I am a 50yo woman, my mental health is terrible because of this, muscle wasting and associated discomfort, I live alone

I think I may try to make a habit of posting once a week or so if there is anything to say.

Question.. I have noticed as the joint pain lessens some they feel more tight around the kneecap.... is this a good thing?

How much is Dr Dye's fee for a remote consultation?

Are we allowed to post things like that?  You can just call them (phone number on his website...just google Dr Dye).  They  will tell you.   

Offline spiderplant

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #103 on: April 17, 2018, 07:15:31 PM »
Did he give you any calcitonin? Do you have any cartilage damage that show up on MRI?

He did not because I did not get the bone scan because I was scared of the radiation involved. No cartilage damage on the MRI just synovitis. But the pain in my left knee is really bad. I've actually read your story and it sounds really similar to mine in terms of the degree of functional impairment, though I think I'm worse. I can't even do one hip abduction rep without getting pain, redness and heat afterwards! And I can't walk without moderate pain. I was curious to see how your progress has been pain and functioning wise and what you're doing for physio/treatment if anything?  I'm getting a PRP next week because I did find a smidge of research that it's helpful for synovitis/synovial volume. I'm only 29 and feel royally effed. It is affecting my personal life and career and plans for pregnancy :(

HI Reader,
How did you manage the flight to San Francisco? how long of a flight did you have?  Just curious in case I end up having to do the same ( I REALLY don't want to because for me its a 5 hr flight plus the driving and airport walking etc... things that I used to take for granted are now huge impediments)

Offline adamas

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Re: chronic PFS- need advice, feel I've tried everything
« Reply #104 on: April 19, 2018, 03:49:46 PM »
Has anyone ever tried a knee brace, when walking or during other daily activities?
What about taping using McConnel's technique? Did it provide relief?

The PT I saw suggested me to try the taping when walking or during other daily activities since she thinks that the source of my burning pain is inflammation of the soft tissue on the medial side of the patella, caused in her opinion by patella lateral tilt, which leads to irritation of that area. So taping should provide some relief in that it moves the patella in such a position to limit stretching of the medial soft tissue.
















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