Exercise support group

[[Le...]]

Yesterday I pushed hard...I wanted to run and see when my body would wuit. I created a playlist psyched myself out and ran at 90% until i couldnt anymore.. It felt sublime...No WD, no bulls.h**. It just felt so good. The rest of the night felt like WD was gone...granted everytime I run I feel this way but well, yesterday felt so great. Almost as if my body and mind knew WD is only temporary....if only

[[kr...]]

wow thats awesome Leo! You were on klon a long time too. and did c/t! were you always athletic? Im wondering why everyones story is so different...makes me wonder sometimes if my issues are not all klon related.

[[Ve...]]

Kris: I wish it were that simple. The way proteins work in the human body is that we eat them and our gut breaks them down into their component amino acids. Then our bodies turn the amino acids back into the proteins we need. We certainly need to eat proteins so we can get the benefit of their amino acids, but they don't go "straight through". If there is a problem making proteins from amino acids, we can't short circuit the process by eating the proteins themselves.

 

But, people on these forums report good results from supplementing their diets with proteins and amino acids. It might be a good idea to do a search for a particular protein or amino acid you might be interested in taking. Also, check out the General Health & Wellbeing and the Alternative Therapies & Supplements forums. Remember that what works for one person won't always work the same way for another person because we're all individuals and we're all at different places in our recovery.

 

Sometimes during a "wave", the physical and emotional symptoms can feel a whole bunch worse than usual, so it's entirely normal for emotional symptoms to feel worse at the same time as physical symptoms. Someone posted that exercise releases extra cortisol and so sometimes exercise can temporarily make us feel a little worse than usual, emotionally and physically, so you'll have to weigh the benefits of exercise against the possibility that sometimes it can make you feel a little worse in the short term.

 

As for me, I still have a lot of pain and stiffness but it's a bazillion times better than it was even two months ago and a whole different universe away from how I felt a year ago. I started walking in December of 2014 and it was insane how much it hurt, but I had akathisia so badly that I had to do something with myself. In February of 2015, I bought a big heavy Schwinn city bike and started riding that around Seattle. It was crazy painful at times, and I have vague memories of having really severe muscle spasms while I was out riding around Lake Washington and having to keep going because I couldn't get home otherwise. Things got a lot better the longer I rode. In December of 2015, I started running. It was intensely painful. Today I ran my fastest three miles ever. I still get pain and sometimes it can be a real struggle, but I keep getting better and feeling better. To be completely honest, in the last two months I feel like I've come farther than I have in the previous eighteen, but I still have a ways to go.

 

Last thing, always remember that a big component of this illness is being extremely excited at all times and that this will often present as anxiety. Take lots of deep breaths. Do your best to use your rational mind to check your emotional state and assure yourself you're safe and sound. It's okay to be afraid, being afraid can't control you unless you let it. We decide how we react to this illness.

 

Good luck tomorrow with your physical therapist. Remember that people say it can cause a lot of soreness initially, but long term it was really helpful for them. I think you're going to be just fine.

 

Leo: Well done! You're amazing.

[[Fi...]]

Vegan--YOU'RE amazing.  And inspirational.  Seriously, just reading about somebody doing something positive toward their healing feels healing to me.    Love picturing you riding around Lake Washington. 

[[Le...]]

wow thats awesome Leo! You were on klon a long time too. and did c/t! were you always athletic? Im wondering why everyones story is so different...makes me wonder sometimes if my issues are not all klon related.

 

Kris-

 

I asked myself that same question a million times. (If this is all WD) I can telk you withoutq shadow of a doubt that yes, it is. I have NEVER had intrusive thoughts or nerve pains before this.

 

I run becuase I choose to not have that taken from me as well. The feeling that I am semi normal after doing excercise is to me very much worth it.

 

Please know for a fact that this ordeal alleviates. It certainly has its ebbs and flows but for sure, the real you wil blossom again!

 

Leo

[[Wo...]]

It gets better for sure. I'm back playing basketball again, and I don't think about WD at all while I'm playing now. For the last few years basketball was a huge panic trigger for me so I just stopped. Being 38 years old I had considered that part of my life was over, but I was wrong for sure. I know I can squeeze at least a few more good years out of these bones.

 

Also, anyone who deals with pain from muscle imbalance or alignment problems, ask your PT about Kinesio tape. I've been using it for my patella femoral pain and it's working really well. It doesn't completely replace your other therapies, but it helps a lot!

 

Oh and I'm still surfing, but a lot less since I had to leave Santa Cruz.

[[kr...]]

i agree Finallyjoining i loved reading vegans post it does feel healing ..thanks Vegan 

 

thanks Leo for the reassurance    I get confused about the exercise lately. After the hip issue ive just had more pain and even sitting its all over. Feel better today. You mentioned muscle imbalance....Ill ask more about that at pt today.

I know it started w hips and low back and always had some alignment stuff gonig to chiro for years. But it spread from there (fascia) but maybe the misalignment or muscle imbalance was the starting point? then came tolerance, wd, insomnia, reliving past etc

Last summer a lot of anxiety and depression and confusion came from my body feeling like it wasnt miine and was failing and what was i going to do?! Horrifying place. NOW iv learned some more and try not to overreact and make it worse.

So i believe you when you say its WD. And I think there is a functional problem too. will learn more at pt but nervous

 

I want to post about my myofascial release appt today bu i have to do some things and get ready to go there. the sun is out! so i want to do a 10 min walk in woods on the way there. The therapy is fascinating and noticed my right leg seemed to be more like it "fit" me again. She said I responded well but the scull down the spine was real tight.

She said how it can affect the brain and mood etc

 

She seems confident so i should be too! I have to trust.

Keep posting buddies

[[kr...]]

wondernova...sorry i just realized it was your post about the alignment/imbalance and the tape. I dont think he can tape up my hips though Good to hear you can play basketball and surf!  Hope i ski this summer. I did a couple times 2 years ago but it was exhausting - i didnt know why then.

[[Wo...]]

Yes Kris, I think the taping is more for knees to get the knee cap to glide in the groove properly. Interestingly, my knee problems are connected to the hips! My quads, IT bands all the way up to the hip flexor is super tight and that pulls the patella off track and causes inflammation and pain. It's very common for people who sit too much. (Or spend too much time in the fetal position like during benzo WD  )

 

That being said, I'm really interested to hear more about this fascial release stuff. I have a feeling it would really help me. I've done massage therapy when I can afford it, but it just doesn't do enough.

[[kr...]]

Heres what the myofascial release went like....Ill describe how I understand it but just google myofascial release. I am excited about this but I have to be patient cause I get anxious being overexcited sometimes (guess its wd)

If you watched this it would seem like shes doing nothing at all but laying hands on your body. It has to be an exact pressure and go in certain directions. Although I could feel slight movements. She checked out my alignment and I laid on the table and she tested how far she could lift each leg before the fascia resisted. which wasnt far at all on the right leg like 5 inches up. Left was a little better. Then started holding my legs in different areas, then gently moving them back n forth holding the ankles or feet. I had to visualize myself skiing or dancing or benchpressing like I have done before. Then she was able to lift it higher. My legs felt like the temperature changed or water was poured over them

She worked her way up and reached underneath too. She said I responded well but the base of the skull down the spine is still very stubborn. She will have to go into that area a few times maybe. 

I felt pretty tired after for a few minutes. My legs felt normal when I walked! the rest of the day! Still not strong because I haven't done much with them.

This web of fascia is super strong stuff! I love massage too wondernova but it wont last cause the fascia just goes back to being tight (thinking thats its normal state) So when we workout, even if our muscles get some benefit, our fascia takes a beating, and mine has been in recoil mode

She does believe the wd plays a part. She thinks my growing years as a competitive gymnast was a factor. I cracked my tailbone as a kid too. This minor misalignment or imbalances are subtle for years causing microtrauma or a weakness in that area prone to fascia problems. Which yea, Ive always had that hip low back tightness but it got real bad with klon tolerance. And the chronic emotional stress Id had settled in the body. After the2nd car accident is when i went downhill fast.

The mind body connection. memory sits in tissue. Its fascinating. It surrounds the brain too which causes depression anxiety tinnitus tmj...or atleast makes it worse if youve always had it i guess. The body wants to protect but this is what can happen. I hope when it gets loosened, the emotional gunk leaves! She says that happens. But still, there were chemical and physiological components too.

 

I went to physical therapy at 4 and he and she are both on the same page! Hes familiar w Dr Barnes and the different techniques. I used active release on me and trigger point. It was like itching that spot you can never reach! He made me aware of how much Ive been compensating w misalignments. I stretched in the "stretcher cage" which really makes it easier. At home its tiring and cant reach everywhere. But the hands on is best.

 

i might make this a regular thing for me in the long term!

 

 

 

[[Ve...]]

Glad that it's helping you out. That's really wonderful, really truly wonderful.

[[Wo...]]

That sounds great Kris! I need to look for something like that in my area.

[[kr...]]

Does anyone know if the tightness/weakness is cause Klon is muscle relaxer? I didnt have this when I quit the tranzene or ativan

 

when you all say your sx flare up w exercise, what sx exactly? Im leary to exercise cause i feel pain shootings in thigh.

[[kr...]]

ok buddies i was so positive last night and thought Id get up in the morning and clean the house and exercise. but again, i wake too early, hard to move, and feeling fearful. analyzing my thoughts. Got up for bathroom, laid down again. walked around outside. just ate little oatmeal.

 

I have the ph no the therapist first called me from...i feel like calling her!

 

leo...i am in that place again ..thinkn this anxiety is not wd. remembering things i dont want to.

[[Ve...]]

Does anyone know if the tightness/weakness is cause Klon is muscle relaxer?

 

Absolutely 100%. Being off Klonopin is like being on a ... whatever the opposite of a muscle relaxer is. Muscle tensifier? It goes away eventually.

[[kr...]]

Hi Vegan that gives me some reassurance...Im asking cause I m comparing to the tranzene and ativan. Also question the anxiety and comparing.

How do i keep going back to fear every morning?? thoughts of unanswered questions. anxiety w simple decisions etc.....n

I know the therapist thinks ill respond well. but i am questioning...i feel like calling her (think i have her cell from her first call back).. or start googling "does brain disorder cause myofacia"

 

A month or so after the big tranzene mess I was working at a gym and exercising again, I was very nervous finding a job and then we ended up moving to CO and I didnt know anything about wd. Felt anxious often, irritable, bf problems (or was I being a problem??) was on paxil and at some point i quit that and we came to MI 9 mo later and no job, living apart at parents, no plan...anxiety! insomnia couldnt eat....i thought it was relationship making me insecure

 

I probably need to post this somewhere else? Im having lotta anxiety and pacing. I posted about "wd or just me" somewhere and cant find it.

Im not sure what my natural state really is anymore.

[[Ve...]]

Kris: You face the fear every morning the same way we all do: reluctant, frustrated, resigned. Same way we wake up to clouds and rain in the morning when we expected sun and warmth. We get up and we deal with what's in front of us. You're dealing with what all of us deal with and it's very, very difficult, but I promise you, it can be done. You have the strength to handle this.

 

One concern I have is that it sounds like you think this therapist is going to "cure" your withdrawal symptoms. I mean, maybe. If she does, you be sure and come back and let us know, because we're all going to line up outside her office to be next. It would be a miracle. So far the only thing resembling a cure has been sitting around freaking out, watching Netflix, and bursting into tears for no good reason. Eventually -- for some of us, it takes years and years -- we get better.

 

The therapy you're doing may help alleviate some of the pain, and I hope it does, but please temper your expectations.

 

It sounds like you're having a rough time. You sound almost exactly like me last year with your anxieties. Sometimes, still today. The worst thing about this illness is that it doesn't feel like it's an illness, it feels like some other illness. It almost always isn't.

 

I went out for a run this morning and just felt horrible the whole way. So slow, not really painful, just tired and dragged out. I had to stop several times for breath, had to slow to a walk to get up some of the hills. The whole way my brain was screaming at me that this was exactly how it was fifteen years ago, that I was going to become a cripple again, that is, if I didn't have a heart attack right there on the trail.

 

Got home and Runkeeper informed me I'd just run my fourth fastest five miles.

 

Which is to say, the stuff that goes on in our head, because of this illness, is just not what's real.

 

I keep saying this and I mean it: It gets better.

[[kr...]]

thanks vegan yes having anxiety and its alot over how much im expecting of myself over the winter (artwork, painting a room, etc) and future .,.and regrets of the past. sometimes tiniest decisions like check mail first or clean cat box...uhg!  Sooo, these concerns will be less consuming?

 

The sun is actually out and warmer snows melting. i want to walk  - some stabbing pains in legs goin on - im so indecisive! I had to at least eat first which i finally had some eggs. I was pushing in the fall and now hip stuff got me hesitant

[[Ve...]]

Kris: Yeah, I'm hesitant to provide any any advice on how to proceed past your leg pain. I was thinking about this earlier today and one of the benefits of spending time not exercising is seeing how many of these weird pains and symptoms don't have anything to do with exercise. Then while I'm exercising, when these things come up, I can know how a "withdrawal pain" feels and just gut it out instead of becoming consumed with anxiety over it.

 

Wish I could be more helpful.

[[kr...]]

yes its hard to know what to expect too. you are helpful. im glad to have a place to go cause i am alone

I can remember normal stiffness from the gym. this is different.

also maybe others agree but I notice anxiety swell up when the pain just inflames all over from doing nothing or maybe from something the day before..,.dunno

 

Im going to go outside!

[[Ve...]]

Going outside is a wonderful idea. Early on in my recovery, I'd just go for walks to the arboretum and wander around on the trails there. It felt like a lot at the time, but most of the benefit I was feeling, I think, was just from being outside and feeling like I was a part of the world. That still feels like the most healing part for me, just breathing that sweet air and feeling the sun on my face.

 

Gotta add that I'm jealous of you being in Michigan. I love the Pacific Northwest, but I grew up visiting family in Michigan, mostly in the west and north of the state, and I have so many fond memories of that place. So beautiful. Glad you can be out in it.

[[Wo...]]

Kris, Yes the anxiety comes with the pain for sure. I think the anxiety and stress causes us to clench our muscles subconsciously, probably when we're asleep mostly. PT will help alleviate the pain, but I think it's an ongoing battle till WD is over.

 

I didn't know anyone here was in Michigan! My parents are from there and I have a lot of family still there. (In Saginaw). I've taken many trips there. Usually summer camping up by Sleeping Bear Dunes. I love it up there. So pretty, and the lakes are magical. Many fond memories.

[[Ve...]]

Oh, and... You're not alone. You have us.

[[kr...]]

Thank you buddies    I mean I'm alone at home and no neighbors neary. A few friends I don't see much ..they have lives ya know.

49 is rough and I think too much! I'm like that but seems especially now. I think everything would be more manageable if I could have workouts like I used to and biking etc.

I thought today what if my brain is messing up my muscles n fascia even w out benzos?? that's just wd?

I have summer rentals again and not sure bout fall and things I'd hoped to do during winter which I havent. Feels like a ft job takin care of me and appts foods reading etc

I try picturing myself in July hiking the dunes w out anxiety. Would help to have kinda some idea when I may feel better. I need to do something more for income!

Anyone known a good protein powder w out gluten? They usually have the amino acids included

Yes Northern MI is beautiful. Lake mich is minutes away and sleepin bear dunes not far

I just walked 45 min..jogged twice 15 sec. I hurt now.

[[kr...]]

Actually hiked the dunes once in october. Hard but did it. And this fascia has been worse only since my bike ride on xmas and hips got messed up.

At the gym n just used roller..omg!! Took my breath away and felt panic. Any of you had relief doin roller?

I don't get it...i felt great last night...could it be from stretching a lot in the stretcher cage at pt? ..or the pt guy doin active release?