posted
I was hoping that someone could tell me if they have difficulty walking and what course of treatment has helped you. I started to have to walk w/a cane back in 05'. Wondering if anything can help. Orginally misdiagnosed with MS, have mayor neuro issues. Posts: 90 | From NC USA | Registered: May 2002
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posted
Hi! I too have had major neurological symptoms, which included problems standing and walking. I am not sure exactly what your problems are (balance, strength,...), but my main issue was staying balanced (with my legs giving out only on occassion).
I got great results with a combination of Clindamycin and Primaxin - my results weren't only limited to my balance, but spread throughout my body and mind.
It took a lot of time to improve, and I still have some balance issues, but they are minimal.
Good Luck!
-------------------- Sometimes when I say �Oh, I�m fine� I want someone to look me in the eyes & say �tell the truth�
posted
Sorry to hear you are having trouble walking. I am glad to hear you have lyme and not MS.
Since I got lyme, I have always had trouble walking. I got lyme 12 years ago, only 2 months ago was diagnosed with lyme. Before that, I was 'diagnosed' and 'treated' for Arthritis, R.A., Bursitis and fibromyalgia. Of course none of the meds they gave me helped and I still had to hooble around like an 80 year old woman, which looks pretty funny when you are actually only 20 years old. I had been walking this way since I was 10, so its always looked VERY weird.
The important part about dealing with your walking problmes is what is going on with your body.
Is Weakness your biggest problem, or is it pain that prevents you from walking? For me pain is the bigger issue, then weakness. My legs give out at times, and weakness is a issue for me, but I am still capable of moving.
Do your joints swell at all? For some people lyme attacks their joints causing inflamation which can actually perminantly damage the joint. Luck for me, I only experience pain and have no inflamation, so I keep walking.
You need to make sure you do not have any physical problems with your joints before you just push on.
What has helped for me is the fact I was never allowed to stop. No one thought I was sick, so I had to keep going and look normal. for this reason, I kept walking no matter what. I can not drive because my eyes are too damaged by the lyme, so I had to walk to class, no matter what. I knew I was not damaging my joints by doing this, so it was only doing me good except for the pain.
If you do not have bad weakness, and have no inflamation/pysical problems causing pain, I would say keep moving! DONT STOP MOVING.
If your biggest problem is weakness, I would say keep doing what you are doing now with the cane, and look into incorperating physical therapy into your life. I hear great things about physical therapy and muscle weakness.
Outside of not letting it stop you, I have not noticwed anything that has helped me with the pain or the weakness. Starting treatment really helped with fatigue for me which helped with weakness, but I am sure you probbably have already started treatment...
I hope this gets better for you. All i can say is dont let it stop you. You must keep going. Stay strong!
posted
I have difficulty walking long distances (like more than a block and a half). I get pain, and also muscles strength doesn't hold up. I also have balance problems, and recently my legs have suddenly just given out from time to time. My experience is much like AP's description.
It's good to hear you've improved, AP. I've been treated for a year, and we keep uncovering co-infections, so my symptoms actually seem to be getting worse, or at least cycling. I certainly have less pain than I did, but the balance and mobility issues are so bad that I finally broke down and got a power wheelchair.
It feels wierd to use it because I can actually walk (people -- including me -- assume if you're in a wheelchair you can't walk at all). But it has been amazingly freeing. We're going to look into buying a new car so I can take it with me (power chairs don't fit inside sedans). I live in a beautiful downtown area, so this lets me get around town easily.
canbravelyme
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posted
I sort of "clomp" back and forth, like the monster from Frankenstein. The stiffness is worse on my left side, and using a cane or walker only adds to my physical disability, because I can't multitask, so the cane and walking is physically confusing.
It's obvious to me the stiff walking is neuro. Anyone else have this? I can't walk much distance either, because the stiffness increases, or eventually I feel the need to stop, or else have a neuro vertigo session with vomiting. If I keep walking to the point of a vomiting event, right before, I'm walking like the Hunchback of Notre Dame, or at worst, shuffling like an old man.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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bettyg
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i used to walk regularly; 10 years ago had to give it up due to severe heel spurs, etc.
then terrible groin pain; had my left hip replaced 3-07; finally the GROIN PAIN IS GONE!
need to work on buildng up my energy level. walked with a cane thispast 1.5 yrs.
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posted
My difficulty with walking showed up literally overnight - went to sleep with no problems except flu symptoms then woke up unable to walk more than 100 feet without rest.
What a shock to someone who was in great physical condition for an entire life.
My leg problems are bilateral on the outside of the legs below the knees. The symptoms have not abated for these 14 years.
Posts: 175 | From Colorado | Registered: Feb 2007
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CaliforniaLyme
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My difficulties with walking were many and varied- I am a neuro mutt-
* I began to getting muscle weakness progressing on my left side first but ending up with weakness so bad I could not rise without assistance and needed to lean on people or go from furniture lurching piece to piece or to wall. Needed help in and out of tub. On stairs I would have to lift my legs with the help of my arms sometimes, not kidding, sounds weird but if you've been there you will know. Had to PULL UP on furntiure next to my bed to getout of bed w/out help- my arms were stronger than my legs. I refused to get cane but should have frankly, doc told me to I was just overwhelmed.
* pain in all muscles and body including bad knee artritis made it painful to walk, so I had a definite limp, varied in intensity, left knee worse.
* I began to SLOW (this is a Parkie thing) (I also had chorea another Parkie thing) If you had this, you would know. It doesn't come up that much here but it was like walking through thick snow or invisible sludge. WOuld take me ten minutes sometimes to cross small space- seemed to swtich off & on, sounds weird, I Know...
* I began to "lose my balance" where my balance would be GONE and I would sway or fall suddenly. Also ahd "earthquake feelings" and "rolling ship" sensations, neuro stuff, not real.
* I began to have sudden muscle seizures where my whole body would spasm and I would lose all muscle control and fall.
* I began to have separate things that sound somewhat alike but they were chorea major, full body JOLTS where my entire body would BOING, have a massive JOLT and my limbs would not LOSE control like they did sometimes as detailed above but would JERK suddenly with a great deal of energy going into them and sometimes lying down I would go even 2 or 3 feet IN THE AIR. this is not exaggeration or a joke. It was amazing and terrible. Every day was a new freakshow with me as the attraction. It SUCKED! But my limbs would JERK in the body JOLTS like a fish on a line as opposed to the muscle sudden body loss of control above where I would go limp like a rag doll. Oh joy.
ALL GONE ALL GONE I ended up after this afte IV Rocephin in the best shape of my life (pre last baby*)! (oh well, not BAD shape now just not perfect) where I ran stairs 8 flights 3-4 times a week 2-3 times in a row!! but took me a full year after bedridden to be able to run again, a full year to regain muscle mass & strength- it was SO SLOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
THANK GOD ALL GONE- GOD, my LLMD and IV ROCPEHIN*)!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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p.s. And I lost sensation in legs from feet up to calves progressively, began in my toes, numbness, seemed to affect the WAY I put my feet down, it was like they were stilts, not feet, I could feel where they WERE but could not feel in them.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Hi CaliforniaLyme -- I've got a question for you:
When I read about how you used to "walk" (the lurching between furniture, stair problems, etc.) it is like I am reading about myself.
How did you know when the Lyme treatment was successful and when to start rehabbing your body?
I know it will take a long time, and I'd like to start (but not too soon, if you know what I mean!)
Thanks!
Posts: 78 | From Rhode Island | Registered: Jul 2006
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CaliforniaLyme
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WELL, it was weird, and let me tell you, that month 7 was the most confusing month because I kept DOUBTING that I was getting better. I had a hard time BELIEVING it!!! I kept thinking I was just imagining things and that it was not better- BUT basically-
my balance stopped going away, it was there. earthquakes and rolling ships stopped happening. no more choking (not walking related but still, a nice thing!) and in my hand there was no pain for a minute suddenly- and then for a few minutes the day after the next-
my getting better speeded up- the last 2 months on IV Rocephin were just miracles evry day- I got my body back every day!!! bit by bit!!!
those were months 8-9
month 7 I got these little things happening but I kept thinking maybe I was just IMAGINING they were better- but I was no longer getting worse!
the WEAKNESS physically
was different than the weakness I FELT
How does this make sense?
I don't know- energy wise!!! One day i felt ENERGY I hadn't felt in YEARS actually, since I'd gotten sick I had been SO SLEEPY and TIRED all the time-and one day i was THERE, ready to go JOGGING and RUNNING again!! (so I thought!)
I even called my doctor that put in my groshong and asked him if it was safe to go jogging with groshong- because I had energy- only thing-
MY BODY WASN'T ABLE TO! I was still WEAK AS A KITTEN!!!!!!!!!!!!!!!!!!!!!!!
I had to do the simplest things over and over to build stength and go tiny bit by tiny bit more each day or as much as I could. I would literally try to walk ONE more foot a day. It took months before I could walk normally up our driveway. Not kidding.
BUT since the 8th month or so my ENERGY level was normal agian, I FELT as if I COULD run, only my body hadn't been let in on that secret*)!*)! Atrophied muscles don't just spring back!!!
My insurance wouldn't apy for physical therapy and so my doc advised me to do strength building exercises daily on my own. WORE ME OUT! WOW!!!
FIVE MINUTES of intense HAND exercises would wipe me out for an afternoon and no, no exagerration, PHYSICALLY I was SPENT.
It was so hard to get my strength back.
Sidenote: as a kid my nickname was "weakling" because I have, my whole life, not had much physical stregnth. This is one hting I wonder about re longtime infection???
To this day, SINCE Lyme, I get weaker *quicker* if I don't exercise regularly.
I exercise daily QUITE a lot.
I hike every weekend.
I run stairs when I have a partner so one of us stands at bottom with kids.
So don't give up- that lurching wall to chair to doorknob hanging on, propped up, straining- horrible- weakened self- may not be forever-
I htought it would be-
Stick with abx!!! They are what I have seen work. Esp if you are bad- IV Rocepihn!!!
Saved my life-
Basically, when all my other gains came, re weakness I just stopped getting WORSE. To get BETTER I had to WORK the muscles to get better. I had to exercise and build up stamina and range of motion. I had to increase both those things daily day after day for a whole year to be able to run A BLOCK!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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p.s. Here's an old post I just popped up on sci.med from me- my old email was AramSarah because my ex husbands name was Aram- ********************************************
Subject: Ouch! Ran 20 yards yesterday, today my left knee-
feels every step, was limping when I woke up. But late afternoon yesterday I ran 20 yards, the first real run in 3 years. I was running 5 miles a night 3-4 nights a week when I was bitten. I want to run again SO badly!!!! But not yet, I guess- still- the last time I tried to run more than a few steps my knees gave way- now at least they are stornger, bit by bit. It is hard not to push it because I am so glad to do tihngs and want so much to do them!! I want to run!!! I want to run a whole block!!!!!!!!!! WIthout stopping! Without my left knee hurting! I hope I get to one day soon- but if not, I still have more quality of life than I ever expected to haev again- and all because of our wonderful doctor who like all hte llmds is taking such a risk in treating us at all.
************************and the next year that time I was running miles again*)!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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I've only been on orals for a year, and under the care of my LLMD since November 2006.
I know I'm not "there" yet, though I do have some improvements in fatigue level and pain (mostly lower back). Basically, I don't feel as if I am dying any more. But the weakness is still here.
Do you think it would be smart to do some exercise (no matter how little) just to keep my body from deteriorating further while in treatment? Or would that hinder my progress in fighting the disease?
I plan on asking my LLMD these questions at my appointment tomorrow -- but it would be nice to get an opinion from someone who's been there.
Thanks.
Posts: 78 | From Rhode Island | Registered: Jul 2006
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I'm also from Californaia (San Francisco) and have tried to pm you several times, you're mailbox is full.
Your posts in this thread caught my attention big time. I am not new to lyme (06), just new to lymenet. I too have had the body jolts and the lifted off the bed experiences. I liken my neuro symptoms too a cat's back lurching when angry.
Although I don't experience these often (several times a month), it's unnerving to say the least.
My back would lurch like that and be thrown back into place within seconds. I felt like I was auditioning for Excorcist 3 movie.
I am currently doing Rocephin IV therapy and am journaling my experience on Canlyme.org. I'm into my second month almost third.
You've answered many of my questions I had like when during the Rocephin did you notice making strides? (you said after month 7).
I would still like to touch base with you. Would you pm me so I can send you an email privately?
posted
Thanks to all for your replies. I have muscle weakness, balance problems, big time brain fog right now and most of all pain. this is mostly in my hip,shoulders and the muscle that are located in your butt. Strange place for it but that is what mostly limits my walking. I can totally relate to having to pick your feet up in order to goup stairs, not to mention getting in and out of the tub/shower. From everyones replies, seems like IV antibiotics would help more than the orals have. Just wondering how you were able to pay for it. I think my insurance will only cover a months worth.
Posts: 90 | From NC USA | Registered: May 2002
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posted
What about post-Lyme balance problems? I've been off treatment (minocycline) for 6 months (after being on it for 12 months, diagnosed 6 months after bite). While I'm generally normal again, I STILL have recurrent balance problems. It's not as bad as it used to be, but sometimes I have to wear sunglasses indoors and walk along walls. I also cannot go inside shopping malls and many stores It's just enough to make me feel like a freak. Can I fix this without going back on a medication, if this is my only symptom?
Posts: 17 | From MD | Registered: Aug 2007
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canbravelyme
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Hi MonaVox,
And who said Lyme didn't give us anything? I think it's doing a ton when it comes to promoting egolessness!
I can relate to the feeling of sticking out due to managing symptoms. I'm sorry you're going through this.
Sarah - you mention SLOW. Can you tell me if you mean walking slowly, and slowing down further until you finally stop? What is that?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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CaliforniaLyme
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Dear LRTBC,
My insurance did not pay a dime. We took out 50,000$ cash as a second mortgage and bought IV Rocephin with it*)!! Worth every dime. My insurance company did not care if I lived or died. Well, actually, they would probably have preferred the latter. Then we got free Rocephin for the last 3 months from the free Rocephin program which I htink they canceled. NOW Rocpehin is a lot cheaper than back then because it went off patent- thank goodness!!!!!!!!!!!! MUCH cheaper!
Mona, if I was you knowing what I know I wouldn't go off abx with symptoms still if oyu offered me 75 million dollars. The general LLMD rule is to continue treating until 2-3 months w/o ANY symptoms!!! Doc J and best LLMDs say 3!!
SFCharm, I will e you. Anyone can also always e me at [email protected]
CanBrave,
No, no, no, you would know SLOW if you had it. I had this thing where I began to SLOW, I literally slowed down. It's a Parkie thing, you would know if you had it. I don't think I have ever met another Lymie WITH it frankly but I had a lot of very bad neuro symptoms not usual with most of us, like chorea in my left hand where my hand would move by itself, it is a neruo movement disorder again assoicated with Parkinsons. I had lupus symptoms, MS symptoms, ALS symptoms, and Parkie symptoms, lucky me*)!*! I also had micrography where my handwriting suddenly became small, cramped and weird.
Literally you get SLOW it is like you get speeded DOWN and are moving in slow motion. It sucked.
Here is a list of Parkinsons symptoms. I had EVERY SINGLE ONE- EXCEPT DROOLING THANK YOU LORD I WAS SpARED *SOMETHING*! But SLOW walkers who ever read this thread, you will know instantly (or maybe slooowly*)! what I mean-!! Also the shuffling- yuup yup YUP!!! ************************************** Muscle rigidity Stiffness Difficulty bending arms or legs Unstable, stooped, or slumped-over posture Loss of balance Gait (walking pattern) changes Shuffling walk ***********Slow movements Difficulty initiating any voluntary movement Difficulty beginning to walk Difficulty getting up from a chair Small steps followed by the need to run to maintain balance Freezing of movement when the movement is stopped, inability to resume movement Muscle aches and pains (myalgia) Shaking, tremors (varying degrees, may not be present) Characteristically occur at rest, may occur at any time May become severe enough to interfere with activities May be worse when tired, excited, or stressed Finger-thumb rubbing (pill-rolling tremor) may be present Changes in facial expression Reduced ability to show facial expressions "Mask" appearance to face Staring May be unable to close mouth Reduced rate of blinking Voice or speech changes Slow speech Low volume Monotone Difficulty speaking Loss of fine motor skills Difficulty writing, may be small and illegible Difficulty eating Difficulty with any activity that requires small movements Uncontrolled, slow movement Frequent falls Decline in intellectual function (may occur, can be severe) A variety of gastrointestinal symptoms, mainly constipation. Note: Initial symptoms may be mild and nonspecific. For instance, the patient may have a mild tremor or a slight feeling that one leg or foot is stiff and dragging.
Additional symptoms that may be associated with this disease:
Depression Confusion Dementia Seborrhea (oily skin) Loss of muscle function or feeling Muscle atrophy Memory loss Drooling Anxiety, stress, and tension
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
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p.s. I take that back- I met on the phone one woman who had that- she had been diagnsoed Parkinsons and had been bedbound but her doc was treating her for Lyme and she was getting better- he began treating pepole in her Parkie supoort group for Lyme too but no one else had doen as well if I remember right- but she began walking again- anyway- she knew SLOW*)!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymeladyinNY
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I know just what you mean by S-L-O-W. Sometimes I'll be limping along and then I'll get slower...and slower, until I can't put one foot in front of the other anymore.
My first symptom after the bull's-eye was my legs giving out from under me after jumping out of bed to tend to my newborn's cries.
Turns out I had - and still have - a lot of hip weakness.
Also, before I was treated for babs I would get a slightly dizzy feeling and then fall backwards. I then wouldn't be able to walk for 2 or 3 days.
Four years into treatment and I still can't walk well. I limp and when I'm really bad I look like Quasimodo.
I need to use a scooter for long distances.
My legs get tired and they hurt much like they used to when I would run. Except all I've done is walk across a room.
I think my walking problem, if it ever goes away, will be my last symptom to go.
In the beginning of my odyssey, when I was looking for answers as to why I could no longer walk, many ducks told me I was crazy because I could actually stand, just not move my legs forward.
They couldn't understand how someone could be strong enough to stand but not be able to walk.
I tried to tell them that the tick that bit me must have done something weird to my legs.
They absolutely refused to consider it - I'd already been treated adequately for Lyme.
Take care!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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quote:Originally posted by CaliforniaLyme: I had this thing where I began to SLOW, I literally slowed down. It's a Parkie thing, you would know if you had it. I don't think I have ever met another Lymie WITH it frankly but
Well it's nice to meet you, fellow SLOW-ers. I know exactly what you mean, I described it the same way to my LLMD, like walking/moving through sludge, or kind of like under deep water, can come on fairly quickly. Can almost freeze you in one place. Very bizarre. I've also had this with other Parkinsons/MS/ALS type symptoms.
(This is the first time I've heard a Lyme patient really describe this - always a relief when that happens!)
My question for you both is, did you ever find this particular symptom responds at all to caffeine (temporarily)?? I sometimes have - almost like caffeine wakes up the muscles a little bit for a few hours - and I wonder if it's a coincidence that caffeine is associated with prevention of Parkinsons, and maybe Parkinsons symptom relief... they think it's because caffeine prevents loss of dopamine. Lyme really screws up neurotransmitters.
Sorry to get off original topic. lrtbc, I have to say my pain issues did get 95% resolved with oral abx, but it did take a while. IV might have been faster, I don't know. Also, some orals get in the brain much more than others (like minocycline, rifampin,...)
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canbravelyme
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Sarah,
Yea, sorry to say so, but it seems from your description that indeed SLOW is part of the repertoire here...which as someone else pointed out, sometimes ends in stop.
Now I wonder if I'm not the only one thinking, "I must be making this up", while it's happening? It's so weird to be walking like this, I just can't believe it. But if I don't go SLOW, and force it as best I can, I pay with a neuro attack.
"Shuffle": Add me to the list. Seems often it is the harbinger of a neuro event: dizziness, vomiting, trouble speaking; but not always. Anyone else?
Tylenol is helping. Tylenol is my miracle drug. I kid you not.
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CaliforniaLyme
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Well, it's a cheaper miracle drug than IV Rocephin!*)!)!
LDFighter, I no longer have any symptoms, all including slowness are gone*)*!)! IV Rocephin took them away&*)!*)! I have 2 damages- slight hearing loss and SNAP RAKLE POPPING of joints- otherwise- no symptoms- this month no left knee 1-2-3 minutes a month flare which was only remaining symptom-
But I am glad to know it's not just me, I was feeling a bit freakish there*)!!!
Yup, it's weird isn't it? For me it would go ON and OFF, just like the slurring of my speech...
I fully expect it all to come back one day when I am older frankly. We'll see!!! One can hope*)!
I feel like I am living on borrowed time, and I am grateful. I am glad I am not cold and dead and lying under 6 feet of dirt!!!!!!!!!!!!!!!
Not yet*)!*)! Take care guys, I am glad we are together here-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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canbravelyme
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Sarah --
The Tylenol prevents my neuro situation from more readily developing into seizure-like events. Still walk SLOW; just can do it for longer
I'm really pleased to hear that everything has resolved. I'd like to think I could go back to running one day, but I would settle for kayaking.
I'm on IM Bicillin.
One thing I would like to know is whether any of you also have the internal dialogue that disbelieves that the slow walking is happening / necessary. I keep thinking it's all in my head, what's my problem?
It's so strange. I feel as though I could push myself to walk faster, but it's clear that I shouldn't (and I don't last very long, either). So I don't push it, and I last longer. I accept this, but there is an aspect of me that disbelieves.
In the meanwhile, I've started practicing mindfulness, to really see what is going on with my walking, if I'm having pain(s); where; what kind; where the stiffness is; where my body would prefer for me to put the weight when I walk; to be mindful to maximize the ability, as well as maximize the experience of the "experience". I keep thinking: "When I get the lesson, I will heal". One lesson at a time...
With best wishes to all, and a little extra wishes tonight to us SLOW walkers,
CBL.
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posted
My walking is affected. I just noticed recently(before my diagnoses with lyme) that in addition to ankle,foot and sole pain, where I used to get teased all my life from my dad about how "softly" I walked...I now seem "clunky" when I put my foot down, and I can hear my heels banging on the floor. Fortunately, if I wear supportive sneakers and keep walking daily, it seems better. Bare feet and flip-flops are definately a no no now.A day of walking that way would spell alot of pain and stiffness next day.
-------------------- LITTLE LYMIE Posts: 29 | From Tamaqua, Pa, USA | Registered: Aug 2007
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CaliforniaLyme
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Sorta, CBL, with the slurring in particular, as I haven't had a drink in 17 years, I used to have my brain go slow at the same time and I would THINK SLOOOOW- it would go ON and thhheenn thhhee whooole wooorld wooouulld slllooowww dooooown and once I was really pathetic and broke down with a friend who was visiting and slurred pitifully,
WHHHHY CAAAN'T I TTAAALLLK NOOOORMMAALLL???
It was very Elephant Man.
I AM A HUMAN BEING!!!!!!!!!!!!!! or whatever it was he shouted in that movie.
Just AGH!!! WHY WHY WHY!!!! Darnit!!!
The slowing didn't bother me as much as mystify me. The falling and seizure-esque stuff worried me more. Sometimes, with the really bizarre symptoms, I would find myself being a spectator with just a lot of amazement at the grotesque glory of the human body- the chorea in my left hand in particular. But the slowing too- was so *intersting* to experience. It was utterly horrifying but at the same time, just mesmirizing and so powerful.
Like with my fingers- I had no control over my own hand with the chorea. None at all. It was moving, just writhing and twisting, on it's own.
I remember the astonishment. Impressed more than any museum ever to see that- just an extraordinary sight to see my fingers, MINE, they were MINE darnit!!! moving in ways I never knew fingers COULD move- and they were MINE! It was amazing- they were NOT mine at those moments- NOT mine not mine- NOT mine! devil fingers- fingers of sickness- not mine-
Especially since by then I had massive arthritis and massive swelling and I COULD NOT MOVE THEM MYSELF ANYMORE ANYWHERE NEAR THOSE bizarre twistings- yet they were so graceful and sibilant and BONELESS-
Sometimes I would, after an episode of particularly striking symptomology (those body jolts and chorea mainly but also incontinence) just go, "WHAT?" incomprehensively.
Or "WHAT THE HECK?"
When a new symptom would come I would often feel emotionally assaulted and then numb, because I always knew it wasn't going to stop, it wasn't a one time thing, it was my new, horrible scary life. Thakn goodness the incontience wasn't ongoing though- that was terrible- just "WHY is there water on my legs?" Total lack of feeling, didn't even know... YIKES!!!
Was so humiliated- and I was alone when it happened, in the kitchen,- and just from then on going, whenever I left the house, "Please Higher Power, don't let it happen again-"
I remember, too, those horrible self-satisfied healthy people who believe in mind-body connections and who would say cruel things like, "The body is a reflection of the spiritual." or some claptrap like that. I was never more spiritual than when i was in agony for two years straight. I prayed non-stop every day, every minute, just to survive it.
I hope all of you guys do as well as I do- life is nice without pain-
take care-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Ah, when my walking problems were more physical (I'd drive with one hand on the wheel and one on my knee, squeezing my leg to make sure it was still there, or at work I'd go on break and just sit outside with my shoes off, staring at wiggling toes and not being able to feel them...) everything went away gradually once I started the abx.
That's the only thing I know to recommend. Also exercising was easy for me to continue for the most part. Stretching was also a small pleasure -- sometimes TERRIBLY hard, especially on the back and neck -- and even some minor yoga that helps you focus on your body parts and feeeeeel them.
I remember also begging my boyfriend to massage me just about every day. He'd have to practially crush my feet into diamonds.
It was worse in the winter, too, so I hope you foot-troubled Lymies improve your walking before then
Anyway, Thanks. I'm seeing my old Lyme doc tomorrow for the first time in 6 months. Why keep worrying about my remaining symptoms if I can do something about it? I'll let you all know what happens...
Posts: 17 | From MD | Registered: Aug 2007
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posted
For those with Parkinson's-type SLOW walking, looks like my question about caffeine wasn't so crazy:
Schwarzschild MA, Chen JF, Ascherio A. Caffeinated clues and the promise of adenosine A(2A) antagonists in PD. Neurology. 2002 Apr 23;58(8):1154-60.
"...In addition to possessing neuroprotective potential, caffeine and other A(2A) antagonists have long been known to acutely reverse motor deficits in a variety of PD models. This symptomatic antiparkinsonian benefit of blocking A(2A) receptors, coupled with their remarkably restricted expression in the basal ganglia, have made A(2A) antagonists attractive targets for drug development..."
PMID: 11971080
Posts: 621 | From US | Registered: Jun 2006
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