Lived Experience Forum

[MoonGal]

@Former-Member, 💜 I am so glad that my empathy post connected for you. I think we are tribe. 💜

I am very fortunate not to have muscle wastage as part of the constellation of my physical problems, I have avoided that one. So sorry to hear of your muscle loss and bad limp. I used to feel embarased by my limp , now I think it is something that shows I lived an interesting life. 😷

As to the physical extent of the aftermath of the Cauda Equina/prolapse... The moment my surgery scar healed I started swimming and aqua-excercising. I was in the pool every day - and I would walk the half length of the pool 20 times up and back (250 metres) hanging on to the side for balane and swim freestyle 40 full laps (4 kilometres) a day, modified to a very small kick as normal kicking this made my pain worse. It conincided with a hypomanic period so I went for it hell for lather for 3 months! <some good things come from being nuts). As the swelling and imflammation receded I did get a few points of feeling back into the sole of my foot. I clearly remember the day I realised I had feeling in the sole of my foot again, I got out of the pool and those non slip tiles with the big nodules the size of 20c pieces all over it and I FELT the tile, I burst into tears! 

Before that walking was really difficult as I had to visually check my foot touching the ground and lifting I walked with a forearm crutch, I was determined to get rid of the crutch because I have dogs and walking a dog with a crutch is difficult. I eventually stopped using the crutch after about 6 months. Sometimes I wish I still used it because I suspect my limp would not be so bad with that extra support, and limping is bad for the lower back, it's a vicious circle,

I have a slight drop foot/drag that gets worse when in a flare up or very tired and constant heightened ankle pain, because the anesthesia affects my knee I don't have knee pain in that leg any more (small mercy but I can tell by swelling that it is having a hard time if I have done too much walking). I too have a very bad limp that gets worse when my back is in spasm (like you say a literal pain in the butt). Some days I am beside myself with pain, but recently I have started using pain patches again (not allowed to mention medication types here though) and that has helped the muscle pain enourmously . I also have forminal narrowing at L5/S1 and my S! joint is unstable so the sciatic nerve is compressed (which is a different issue to the causa equina).  My shin bone is totally numb (parastehsia) and the two muscles either side - the tibialis anterior and soleo - react with allodynia (painful to touch out of proportion to the touch). I also experience neuro-things like sharp pains (on top of the constant pain) in my shin bone, bottom of my foot, inner thigh and saddle area. 
That suck-the-air-in-sharply feeling. The worst thing though was the total and permanent numbness, a loss of feeling in my, ummm, lady parts (the word is prohibited, starts with c ends with s).

If I accidently rotate my spine from right to left I lose my left leg all together and fall down. I have learned to sleep on my left side, knees together slightly drawn up - it is rare for a rotation to happen but when it does, like you it flares everything up. I use a TENS unit (this one) when my back is acute or in spasm and it is amazing. I went overseas in 2015 and used the TENS everyday and it helped alot - as it was a road trip I was in the car alot but as a passenger which is not as hard as driving. I find more than 20 minutes driving (or sitting, or standing, or walking, LOL!) really impacts my nerves. I use a mesh back support in the car and used to use it in my typing chair but it broke I really NEED to get another one! 

Every one is different depending on which of the myriad nerves in the Cauda Equina were permanently damaged. 

I salute you for your tenacity and keeping on keeping on with work. I worked for another 5 months after my back injury and surgery once I went back to work, then was made 'redundant' (long story there) and I tried over the following two years to work office jobs, but always fell over at the three to four week stage. Eventually I had several consults with my Doctor to determine if some of the other pain issues I was having could be resolved, this resulted in a full hysterectomy and double oopherectomy in 2014 (after which I went throughly nuts for 6 months post surgery) I eventually withdrew from the workforce as I was an 'unreliable employee" in late 2014. I do a bit of online volunteer work for a small NGO - web & graphic design work now and keep house. Vacuuming is my worst enemy! I read alot of books and spend too much time in FB. I would love to start swimming again but developed bursitis in both shoulders in 2013/2014 so can’t do freestyle or back stroke anymore. 😢

Oh wow, look at that... I went on and on 😃  you asked! 😏 

[Former-Member]

Oh @MoonGal, your reply did go on ... and on.  But thats quite all right, I did ask, and was very interested to know more.  So thankyou.

I do know that feeling of numbness - I had that in my left foot really badly for at least 3 years as I recall.  Its really odd to not feel a sense of touch when you put your foot down.  And I remember when I did start to finally get some feeling back in my left foot - it suddenly felt like I was walking on a tennis ball.  Or at least what I imagined it would feel like anyway.  It still feels like that even now, but it varies a bit in the intensity, I guess depending on how much pressure there is on the L5/S1 nerve at the time. For me it is the L5/S1 nerve which is affected the most.  The L4/L5 not as much.  I have gotten used to the constant pins and needles and coldness that still persists in the ankle and foot.

And I find it really bothersome that when I get an itch at the back of my left thigh above the knee, that I scratch and cant feel a thing.  It is totally numb from just below the back of the knee to about half way up the back of my leg.  Pretty silly how the little things sometimes bother you the most.

I also did a lot of aqua therapy once I was able to walk again.  And I did find it of some benefit overall, its just a shame it couldnt have helped rebuild some of the wasted muscle.  I also went through a lot of physiotherapy, mostly traction in the early days, then moving to aqua therapy.

Like you, I also have difficulty picking up my left leg properly.  As I get tired, I drag my left leg quite badly and I need to be constantly aware in order to prevent stumbling.

Gee you really did go like a bull at a gate after your operation didnt you?  Good for you, and I am sure it was of help at the time.  Ha ha, yeah I guess being nuts does have its advantages.  I am yet to find those yet though - perhaps one day I will be grateful for being a little nutty also.  

Thanks for attempting to explain some of the issues in the modified way you need to in order to get the message across.  I got it by the way.  Thankfully I am not affected in that way - lucky hey?

I also need to be very careful when travelling, and we have a good travelling car which has all the necessary adjustments which makes things easier than it otherwise would be.  So I manage.

Vacuuming - yep agree.  Along with ironing, making beds, and standing at the kitchen sink to wash up or the bench to prepare food.  All those everyday things that become next to impossible at times.  I am very lucky though, I have a cleaner come in and help out for a couple of hours each week.  She does all the vacuuming and bathrooms and any heavy washing or bed changes.  She's great.

I am sorry you had to go through the hysterectomy and oopherectomy.  I am thinking that it was unrelated to your spinal injury though?  I hope it resulted in the desired outcome for you.  Tough though it would no doubt have been for you.

I am lucky with my work because it is only between 6 and 12 hours per week, is very flexible and much of it I am able to bring home with me and do at home in my own time.  So it works out well for me.  I simply would not be able to cope without the flexibility, so I was very fortunate to find suitable work.  

My GP keeps says to me whenever I go to see him for another pack of strong opioid-type pain killers that I shouldnt be working.  But I explain to him that work is really important to me, and I need to keep working.  That I will find a way to get through.  

Then when I see him when I have to get another script for my ADs or the medication I take at night for PTSD-related sleep disturbances and nightmares, he says "are you sure you should be working right now"?  Yes ... I remind him that for my own sense of worth ... I need to work.  The ADs I am on have a dual purpose as they are also meant to be beneficial for nerve pain. 

The times I struggle the most though is when my pain is bad and I become depressed, on top of the usual extreme anxiety.  Lack of sleep and everything else all just seem to add up and conbine to drag me down.  That too is a viscious cycle I find.

I had a bit of a panic attack today on my way home from work.  Really silly I know.  But I was driving home (its only a 10 mins drive) and a car pulled up alongside me at the only set of traffic lights I had to go through.  As I glanced alongside I noticed the onle and only other car at the lights.  It was a sports type vehicle and the same 'make' and colour of car as the person who assaulted me had.  Straight away my breath was caught in my throat, and I couldnt breath.  My heart was racing a 100 miles an hour, and I was shaking violently.  It took a while but I was eventually able to convince myself that it wasnt 'him', and that I was  being totally stupid.  Finally I was able to force myself to do a few relaxing breaths before driving on.

I am getting better at overcoming this sort of occurance now - but I still find it quite devastating that my state of mind can so simply and quickly go down the 'gurgler' over a simple thing like this.  And even though it happened almost 2 hours ago, I am still feeling really shaken up.  Like I am all shakey on the inside as well as outside, still having trouble catching my breath and my heart hurts.

Anyway MoonGal, enough about me - how has your day been so far?  

[MoonGal]

@Former-Member - wow we have used some pixels today 🙂

Yes the hysterectomy was in regards chronic pelvic pain (exisiting before my back injury too) it was a bit hard to sort out what pain was what for a couple of years, but on investigation discovered some nasty cellular changes that had to be removed - all clearin the end. 

That anxiety spike, in relation tpt he car/man triggering you, oh I know that being hijacked by my own brain and biochemistry - it can take hours to come back to myself. A lot of my triggering happens with family, it is bloody hard work to be in their presence when all that is screaming in my brain is 'runaway, runaway'.

I can't beliee I went on and on and on! But thanks for reading it all. Not many people are remotely interested in the BACK lived experience I got excited to tell someone who would understand it all.

I like your despcription about when your foot came back on line like stepping on tennis balls, that is it! I used to descibe it like the ground was deep rubber foam and walking felt like my foot was going down into the ground with every step. 

So glad for you that you have a flexible job, excellent.

I tend not to rest enough, so today with back pain arching up I actually went and read in bed an had a nap for a few hours. I always feel like I am being slack whenI do that - but my lovely partner says I don't nap enough. 🙂 Got woken up by our foster greyhound after a few hours thinking he had spent waaaay enough time alone now thank you!

Hope your adrenaline and spiked system get a calm down and you have a nice evening.

[MoonGal]

@Former-Member, I have been thinking abut you and how you started a conversation about PTSD and we morphed it into a conversation about back injury and pain. 

I worried that I had hijacked your original thread and was obsessing about that last night as I tried to go to sleep. Then I realised that these conditions co-exist with out mental health, impact on our mental health and go largely unconnected with our mental health when discussing our lives with counsellors and doctors etc..

I know that when I am in full-flight anxiety and PTSD - triggered or really depressed, my pain becomes much worse, which then makes anything I do to try to ameliorate against the fear/tears harder. I have difficulty exercising (which is recommended for good mental health management) and I fall into a vicious cycle of pain and stuckedness because I can't get up and going like I would like to, or as would be 'good' for me.

Have you found that your physical disability has also impacted on your mental health? I started a thread early this year about exercise and goal setting and hoping for some weight loss and lots of us got involved with that thread I ended up fizzling out because everything I was doing exacerbated one injury or the other and then Mum's life falling apart into dementia and lack of self-care overtook my life pretty solidly for the past 8 months or so.

What things do you do physical or mental or activities that helps keep the terror at bay or recover from an incident? 

I also wonder for those of us who live with PSTD whether there is any hope of this part of our mental/physical/emotional health getting better with time, or whether we are stuck with it. I have read a lot about PTSD and war veterans and there seems to be some progress for some people with various approaches, but I haven't read of great success for people who have lived with personal trauma like assault etc ever 'getting over it". I suspect too that our physical pain (all pain is in the brain - as that is where pain is processed) and our mental health is inextricably linked. 

[Former-Member]

@MoonGal - yes I am certain that chronic pain and flare ups of PTSD symptoms go hand in hand.

I very often find that when my PTSD hits the hardest, it also seems to coincide with a flareup of physical pain.

I definitely think that it is all a part of living with PTSD every day.  At least for me it is.  And I strongly suspect that it is for you also.

Although in saying that I am not always quite certain which comes first - the increased pain or the increased PTSD anxiety symptoms.  A bit like the age old discussion of which came first - the chicken or the egg?

Certainly when one or the other is at its worst, it is like you say .... you become much less able to deal with either one (the pain or the anxiety).  They both seem to feed off each other.  Very much a vicious cycle of anxiety and pain, and with the pain for me also follows the depression. Yuk, yuk, yuk.

As you know yourself, when my chronic pain becomes really bad, there is really nothing physical that I can do.  When I am at my best physically I try to attend Pilates classes. And I seem to cope reasonably well with that usually.  But I can be a bit of a competitive beast, so I need to be very careful not to try to compete with the rest of the small group.  I just have to go at my own pace, as I know what will aggravate the injury, and what I shouldnt be doing.

I have been told by my psych that I will always live with the symptoms of PTSD.  That my anxiety levels will always be at a very high 'natural' level.  She also says that a sexual assault is one of the hardest trauma's to recover from.  Mainly because it involves so much of the emotional content- broken trust, feelings of vulnerability, etc.

But my aim is to learn methods of dealing with the symptoms more effectively, which will in turn lead me to live a less traumatised life.  I am still working on this.

[Former-Member]

Thinking of you @Former-Member 💕
How are you going? 🌷🌻🌺

[Former-Member]

Hi @Former-Member.  Thankyou for thinking of me, thats lovely of you.

I have been really busy at work over the past week, and am feeling pretty snowed under.  And not been sleeping very well either, which doesnt help.

So I just havent been on here very much for a while.  I am doing okay in  general though I think.  Although my hubby goes away tomorrow for 3 weeks, and this usually brings on an increase in anxiety and other ptsd symptoms.  

Being on my own just seems to leave me feeling like a 'nervous Nellie', for no good reason.  I find this really annoying because I am very much an introvert, and used to love spending time on my own.  And in fact I need it to recharge.  But this is one of the things my 'attacker' has robbed me of - my former love of solitude and to feel comfortable in that.  I will never forgive him this!

So how about yourself - how're you doing?  

[Former-Member]

Hi @Former-Member 💜
Thanks for your reply. Will read it after I have a nap. Need to switch off and rest for now, sorry. Chat later. 💕

[Appleblossom]

Hi @Former-Member @MoonGal & @Former-Member

My main aim in life after setting my kids off on a decent life ... is getting back to being comfortable in my own skin.  After PTSD and chronic pain issues ...IT TAKES A LOT of WORK.

[Former-Member]

Hi @Former-Member  I was hoping to feel better after a nap and reply in a positive way, but I really feel awful still.

Sorry to hear that you haven't been going so well.  Sounds like you have been busy with work.  Having pain on top of PTSD is very difficult for you.  I can often keep mine under control a bit with pilates stretches, but it sounds like you have different kind of pain, that isn't easily fixed.  Must be awful for you.

 I've been feeling unusually stressed, anxious etc for a few weeks now, since starting therapy again.  I'm sure I'll feel better eventually.  I had alot of PTSD triggers on the weekend, still trying to get over it all.

Take care.  Take time to rest.  Oh and feel free to chat on here while your partner/husband goes away.  I understand what you mean.  I hate staying home overnight on my own.  You might find that after a couple of nights, you might get used to it, I hope so.  Doors locked with a light left on.