My Femur Stryde LL (with Dr. Debiparshad) diary

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Quote from: JsElysianEagle on August 20, 2019, 05:08:22 PM@lalbadshah and @IFS - if someone is working 100% remotely, would you say it's feasible to take the first 3 weeks completely off work, and then resume working remotely? Also my hours are quite flexible, I usually have to put in about 3-4 hours a day tops most days.

I'm hoping this work schedule makes it easier to deal with CLL!

working remotely, flexible hours and putting in 3-4 hours a day - YES definitely possible.

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I agree 100% wit tho who say that the worst actually (in a way, not in every sense) comes after you have gained 3 cms or so. It is true that you are able to walk (though funny) and walk long with cane and walker but your thighs are probably the tightest now and the muscles probably at the worst shape, you start to get new kind of pains etc. for me things were smooth until 4 days back when I started having this weird pain in certain muscles that only comes when I am trying to get down from bed, chair or car and in some other similar situations, it was initially confined in like two areas of 1 inch size muscles on left femur's side skin but today I got same thing in (addition) on the muscle on my right side of my right leg's kneecap as well, I not being a native speaker of English do not know how best to describe a very peculiar kind of pain (Ronnie and my PT asked me to describe ad gave hints for me to describe it but I still struggled to describe, then my PT suggested why not I search the forum and ask around/see if it is something already known, the PT doctor also feels that it is just the result of normal muscle weakness because of stretching) but it is like two-three 1 inch small alien muscle type creatures entered your thigh and whenever you move like get down frm car, bed etc or turn they give you burn and electric current shock for a second and twitch for a second as if they are different then rest of your body/muscles, they act only when I am getting down from car, bed, chair etc./b] , while the level is not 10, it is definitely 7, but bearable because it lasts less than a second (which is the good thing). My next consultation with Dr. D is on 8/29 and I will definitely spend most of the time discussing this with him, I am also wondering whether I should try to pull in the visit. I will also pay visit to my las vegas PT Alex (she was awesome) to say hello to her, to get some stretching from her (man her stretching service is awesome, when she stretches your legs you feel so good, you feel like you are in heaven and an angel is stretching you and she is as sweet looking and kind mannered as an angel) and to get her opinion as well on the muscle burn/electric kind of sensation pain thing (of course I will offer her and her agency adequate consultation fee). Also, in view of this I am thinking of stopping PT for 2-3 days because - i) I have been doing PT from 3 wks non stop, 2 wks in vegas 1 wk here ii) I have a doubt that this pain may be a result of some exercise fatigue (?) iii) will get more time to sleep and heal ( had been doing lot of PT and walking lately) which may help the situation. Any input/thought/advice would be appreciated?

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Friends, at last - after spending hours on research and discussion at last apparently (it seems) I have been able to figure out about what is going on about the burning/shock kind pains in specific muscles. It seems what my PT doctor (not PT instructor but the doctor who runs PT facility) had predicted is true and it is just cramps , resulting from weakened (stretched and overused) muscles, since I have been lengthening 1mm a day, doing almost 1.5 hr PT a day and walking some amount each day the total strain might have been too much for some muscles. Anyway from my research it seems this is something all LL'ers go through and I hope/it seems it passes with time in most cases (and does not become serious issue it seems), as of now in my case it is shifting rapidly from one area to another, it started 3 days back on left thigh, now it is almost gone from there (earlier it was happening 15 times a day there, now only 1-2 times today) and is now on the left side muscles of right leg's knee cap (started with 1-2 times a day to now happening 15-16 times a day, almost whenever I try to make moves like getting down, up from car, bed, chair etc). I look forward to 8/29 to get confirmation on this from dr. D during my next consultation and really hope that my finding is true and it is just a normal/no big issue. Keeping fingers crossed. Feel free to chime in/comment, any insight is appreciated.

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lalbadshah - thanks for the continued updates! i am sure even if people don't immediately respond many are reading and digesting the valuable information you're sharing as you make your way to your goal.

hang in there - i'm sure you will pull through the pain and be past this very soon!

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Thanks elysian eagle, (I) hope so.

The muscle cramp issue on right leg knee cap is becoming the biggest challenge that I have faced so far in my 7 week's journey. I just woke up with immense pain and soreness on the right kneecap. It was so severe pain, that when I woke up I was pretty sure there will be blood all around and I may call 911 or check into emergency, but guess what? there was nothing, not even a swollen knee cap. no discoloration, redness or anything odd at all!! Visibly it is as good as it has always looked but inside there is pain (though normally only like 3.5/4 level if you are not doing any activity, at times even lower like 1.5/2) but when you do any activity that make the muscles move the pain reaches 9/10 (for anything that requires movement of muscles around kneecap, like getting down from bed, putting on shoes, getting down from car, moving leg in some ways that require those muscles to move), the feeling is like those muscles are tearing/breaking apart and dripping blood (I literally feel like blood drops falling inside !!) but from outside you see nothing at all,  looks perfectly normal!!!, god knows what is going on inside actually and why in this specific 2 inch radius  muscles/area (on left side of right knee cap). I still think it is a cramp that all LLers experience but surprisingly it seems not more tan 2 people (besides me) have written about it, maybe for them other issues had become bigger concerns and for me this is biggest one (now at least). I have bought a pain relieving gel patch pack today in case the pain just becomes too unbearable, though my intention is to fight it out for now and wait for my appointment with Dr. D on 8/29, though I will text Ronnie asking him to text the doctor for a quick check/opinion beforehand (by text) if possible. Note: everything else is going fine, PT, eating, walking and btw the kneecap pain does not appear when I am walking maybe because at that time the problematic muscles are not involved(per my PT doctor 's opinion -that is the case).

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one note; I just realized tat in an earlier post by mistake I wrote the problem muscles/veins as right side of right knee cap but let me correct it - the problematic muscles are actually the left side of right knee cap. right side muscles of that kneecap are acting fine without any problem.

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update: Ronnie being as quick and helpful as he is , as soon as I texted him my concern on the high pain cramp on right knee cap, he relayed my message to doctor D and dr D recommended that I reduce lengthening to 1 session (.33 mm) a day until I see him on 8/29. I know some other patients (with diaries here) have benefited from reduced lengthening when they faced huge adversities, so I hope in my case also it will be helpful, keeping fingers crossed.

I have decided not to reduce PT or walking , initially I thought maybe I should but I decided not to, lets see how reduced lengthening affects, if still problem persists I may reduce PT and walking for a couple of days to see the effect. I had increased my sleep to almost 10 hours yesterday (from usual 6) but it did not really help the situation much.

I am at almost 33mm and this is the first time in my journey that I am really being tested by very high pain (which interestingly/unfortunately is nerve pain and that also on kneecap and only occurring in a 2 inch area for only a few seconds a day during only a few/certain type of leg movements, but the sheer brutality/severity of it is what is intolerable, making me cry). Thing were so much smoother until now, feeling so bad and sad....if this thing goes away I may actually stop at 51 mm (2 inch) though my original plan was to do 60 or if possible 65. because I want my journey to be smooth and easy without too many nerve wrecking or brutal experiences/memories (and anyway I will do tibia as well after 1.5 years, ideally 50mm or at least 45mm if things go rough), god please give me at least 18 more good days to gain 18 mm more, plz....

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Hi Lalbadshah

I am quite certain that reducing lengthening will help you reduce the pain.  Pretty much all kind of the pains LLers may experience come from the lengthening of muscles and nerves.  Reducing or even stopping lengthening until you feel better is the best way to save you from the pain.  I also experienced some pains or unbearable tightness during lengthening so I reduced lengthening until I felt better and then resumed the lengthening until my goal was achieved.

I also think you may not have enough stretches in your knees.  Although you are lengthening femurs, all muscles and nerves are connected to the lower part of legs through knees.  Walking or hamstring stretches can't efficiently stretch muscles nearby knees. Sit the edge of bed and kick and bend your knees as much as you can.  Lie on your stomach on the bed and bend your knees as much as you can.  If someone can push your knees to bend, that would be more effective.

You will be fine.  So don't worry too much now.  Just reduce the lengthening until you feel better (don't feel too bad about reducing the lengthening rate.  As long as you get what you want, that is all that matters.).  Stretch more on your knees. 

ps: I also think it is better to stretch more often at the relatively tolerable intensity rather than a few times with a high intensity.
 

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Quote from: Ghostfish on August 26, 2019, 01:44:32 PMHi Lalbadshah

I am quite certain that reducing lengthening will help you reduce the pain.  Pretty much all kind of the pains LLers may experience come from the lengthening of muscles and nerves.  Reducing or even stopping lengthening until you feel better is the best way to save you from the pain.  I also experienced some pains or unbearable tightness during lengthening so I reduced lengthening until I felt better and then resumed the lengthening until my goal was achieved.

I also think you may not have enough stretches in your knees.  Although you are lengthening femurs, all muscles and nerves are connected to the lower part of legs through knees.  Walking or hamstring stretches can't efficiently stretch muscles nearby knees. Sit the edge of bed and kick and bend your knees as much as you can.  Lie on your stomach on the bed and bend your knees as much as you can.  If someone can push your knees to bend, that would be more effective.

You will be fine.  So don't worry too much now.  Just reduce the lengthening until you feel better (don't feel too bad about reducing the lengthening rate.  As long as you get what you want, that is all that matters.).  Stretch more on your knees. 

ps: I also think it is better to stretch more often at the relatively tolerable intensity rather than a few times with a high intensity.

Thanks ghostfish for your kind help you are a good person, what you wrote made me think and ( being a person with high IQ) I could connect the dots , what u say makes sense - after coming back from las vegas, I have stopped stretching knees, my current PT (I am his first ever ll case) has been more focused on making my tibia/lower part stronger so that no matter how weak (due to stretching) femur  becomes I can walk, but he neglected the lower part stretching , I tried to do it at home one day (because my Las Vegas PT had told me to do so) but failed because with the band (i bought from Amazon) I could not properly get hold of my feet wit it ( and am alone so could not find anybody to help). now, today i have already started doing what you recommended and I will also straightway tell my PT to help me do the knee stretching , in the past I had mildly asked why he is not doing it and he said the PT doctor (head of the PT center) wants to focus on building knee strength first, but today I have decided this time it will not be a request from me, today it will be an order (to stretch knees). Also, though my post-op visit is on 8/29 with dr. D, I have extended my visit to las vegas to 6 days just to get 6 days of PT from my awesome PT who was giving me PT there. Thanks for thinking about a fellow LLer's problems and offering help.

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Sounds great!  I can see you become more positive already!  That is very important.  During LL journey, most of ppl will go through some depression, regret,
 unbearable pain, or other difficulties.  Staying positive is very important.  You will feel much better after reducing lengthening and stretching more including knees.  It will take only several days.
Stay strong!