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T7 and T8 injuries anyone?

Apr 14, 2016 2:54 PM

Just out of curiosity, does anyone have problems around their T7-T8 bones in their spine? I'm curious if there are similarities in symptoms owing to the actual placement of issues with your spine.

Anyone interested in comparing notes on this?

I hope everyone is either feeling ok or sufficiently distracting themselves today!!

Apr 14, 2016 4:30 PM

I have T6-T7 disc protrusion, right paracentral protrusion of the T7-T8 disc and central protrusion of the T10-T11 disc. Not sure if this is similar but the burning pain is terrible.

Apr 14, 2016 4:48 PM

Shammagren, I'm really sorry to hear that. :(

My worst pain is around the spine itself (lower back), and it is more like getting kicked in the balls (deep internal pain) and sort of like a cinder block is sitting on my spine any time anything touches it (clothes, blankets, people, etc.). I have had burning pain in the past, but less so than other kinds like numbness and acute ripping pain. I don't have orthopedic or disc issues. They believe the damage was a bruise on the cord and nerve bundles in the facets in the T7-T8 area. Not sure if that makes a difference.

I seem to have stuff going on in my extremities and I'm trying to figure out what's related and what's not. My feet have reduced sensation (one has almost none), reduced circulation in one foot (it's cold to the touch), and they are constantly tingling/falling asleep. I've gotten very very severe nerve like pain in both legs for an extended couple of weeks (and another incident about a day or so long) and had trouble walking. I have other stuff going on in my shoulders, neck, face, and arms.

Have you had any issues with nerve/circulation related pain in your extremities, or just in your back? Please only answer if you're comfortable. No pressure at all.

Apr 14, 2016 7:10 PM

I'm a quad from C3/4-6/7 incomplete and also at T7-8 Complete Spinal Cord Injury, Everything that goes along with being quadriplegic....

Apr 14, 2016 9:27 PM

I am not sure what a kick in the balls feels like but I am guessing it is most unpleasant. ( : one advantage to being a woman I am sure.

I get the pins and needles like my feet fall asleep but they are not. I go through stumbling, near falling, dropping things, headache (that might be my cervical spine issues). Sometimes I feel like the blankets are super heavy and it feels like it is causing pressure. Lifting my arms over shoulder height hurts and if I am even getting a bowl down from the top shelf I have tears in my eyes. Then there is the rib and breast bone pain.

In 2014 I had some bad episodes with for lack of better words "pain seizures" I was falling, could barely walk at times and uncontrollable jerks.

I have lumbar issues too so the lower back I always guess is from that. My spine hurts like someone punched me in it right between my hips. The pain radiates down and comes around to the front of my hips. I will feel like my pelvis is in multiple pieces that grind against each other when I walk.

Apr 14, 2016 9:46 PM

Ouch! Sounds quite similar in many ways. Nearly all of the symptoms you describe are things I've been dealing with over the past few years. This is extremely helpful to know so thank you so much for sharing!

The being punched between the hips feeling sounds like the female equivalent of getting kicked in the balls. :)

I had a bad episode that sounds like what you call "pain seizures". I couldn't walk, stand, lie down, or sleep without it waking me up in horrible pain. I actually broke my foot somehow during that period without realizing for well over a month! It was quite scary!

Have you found anything particularly helpful? I'm always looking for new things to try on the off chance that I stumble across some magical pain relieving technique. :)

I wish you all the best and please feel free to contact me if you ever want to talk more about it. Maybe we can figure some of this stuff out together. :)

Apr 14, 2016 9:47 PM

Jahmac-

I'm really sorry to hear about all of your troubles. I wish I could say something useful or helpful, but let me know if there is any little thing I can do to help.

All the best!

Apr 14, 2016 10:03 PM

Ha..the punch between the hips wasn't gender specific just like being punched in the back.

For the pain seizures the gabapentin seems to have stopped those, along with the shaking.

I take muscle relaxers 4 times a day and that has helped with spasms.

While so far there is no pain med I have taken that stops the pain or even touches it. That being said my daughter bought me some edible marijuana it did more for me than any pain medications. I refuse to smoke it as i have my own opinion on why people smoke it. Eating it has no high, one of the only times I remember actual getting tired, having some relaxation and falling asleep. I typically zonk out in pain then wake throughout the night in pain and have to get up and move around.

Other than that I try to follow the doctors order of no BLT (bend, lift, twist) I have had to give up 90 percent of driving because it hurts to push on break. I try to rearrange everything to a level I don't have to bend or reach to high. I own a grabber now.

What works for you? Or worked some?. Right now my spine is at its worse I walked yesterday on small inclines which I know is a no no but I get so sick of not being able to live.

Apr 15, 2016 10:32 AM

I used to have a baclofen pump fitted for spinal cord injury related spasms, but I had to have it removed, I went onto oral baclofen but also have tizanidine too.

Apr 15, 2016 12:34 PM

JahMac I am on tizanidine I am not sure how helpful it is for you but other than decrease spasms it doesn't do much.

I don't want to pry and you dont have to answer but if you are comfortable with sharing..how did your injuries occur? As I am not familiar with paraplegic other than by defination, are you in a lot of pain?

Apr 15, 2016 2:18 PM

I had multilevel fractures from T2 to T10. Disc damage 4/5, 7,8 and 9,10. 18 months later and the pain from T4 down is relentless. I lie flat to relax the muscles and take tramadol slow release but haven't found anything that is effective so far. I can relate to the being punched in the back feeling too.

Apr 15, 2016 6:12 PM

Not at all Shammagren.
I was born with congenital Stenosis of the entire spine and a scoliotic curvature and juvenile disc disease (L2-S1 all protruded along with my whole C spine deteriorated and had discs compromising my spinal cord) , by the time I was 20 the pain I experienced was awful, sciatica, nerve pain down my arms and hands, I continued to work(I was a professional chef) having bouts of 6-8 week periods off work when my back would give out. I had to be medically retired in 2011 when I was 31, then the following year my feet had both dropped, so walking became extremely difficult, which was how I ended up quadriplegic, I had a massive fall down a rather large set of stairs, because of the spinal complications I already had my spinal cord in my C Spine was damaged (incomplete which means I have use of some of my arm and hand movement) but my thoracic spine at T7/8 was a Complete (complete meaning total paralysis) injury due to some other complications in surgery. My flexion in my fingers doesn't work and my triceps and biceps are both very week and it's very had to pick things up as I don't have grip. I suffer with lots of pain from what I can feel in my arms, it can be difficult breathing sometimes as my diaphragm is partially paralysed, and I have problems regulating my BP and my temperature, and then I get catheter issues which cause pain, and a few other bits and bobs. I try to live by what I CAN do not CAN'T, yes I'm restricted but I have my brilliant personal care assistants who are like family who care for me 24 hours, without them things would be a lot harder.
Ps. Tizanidine is rubbish😊

Apr 15, 2016 6:41 PM

Wow Jahmac, what an ordeal! I love the "living by what you CAN do, not what you CAN'T" line. I may steal that with your permission. :)

I'm so happy you found personal assistants you like who can help you and support you!

I'm around your age (32) so I know how jarring it is to have pain relatively early into adult life. I was around 24 when I injured my spinal cord.

I wish you all the best. Let me know if you ever need to vent. :)

Apr 15, 2016 7:05 PM

Shammagren-

I've tried most of the usual nerve meds, and a few more off label things.

Right now my regiment is mainly hydrocodone (the dose can modulate based on how bad things are, but usually 5-6x per day in reasonably low doses).

I take both cymbalta (an SNRI), and gralise (extended release gabapentin) at night. These two are the things that have worked best for me out of anything. In the morning I've been supplementing the Gralise with regular gabapentin, but I hate it. Makes me have frontal lobe issues (memory, inability to find the right word, etc). My job requires me to think clearly and carefully, so this is amongst the worst side effect one could imagine for me.

To get to sleep I do take Tizanidine. I don't use it as a muscle relaxant, just a way to knock myself out for a few hours before I wake up in pain. My doc likes it because he says its non-addictive and relatively mild. I probably wouldn't use it for muscle stuff because it does very little for me.

I used to take venlafaxine instead of cymbalta. That actually helped quite a bit in my case (particularly for my back), but had horrible side effects. Cymbalta is better on the side effects, worse at treating the issues. Still a hell of a lot better than nothing. SNRIs are a bit scary because they're so delocalized. They affect brain function in addition to dulling nerve pain a bit, so I really wish I could get away with dropping that one.

Gabapentin, as I said, makes me really forgetful and borderline stupid at times. I was taking it at high doses for a while, but I had to stop. It was just messing with my cognition too much. Then we tried Gralise. I love it! It works so much better than the gabapentin because it's not a spike and then a drop. It's all-day help with the nerve pain, and once in a while needs a little boost from regular gaba. It doesn't make me dizzy, uncoordinated, foggy, etc. so this is one solution that truly helped me.

I've been taking hydro for years and basically always been tired, lethargic, etc. pretty recently, my pain psychiatrist suggested we try taking dextroamphetamine (like aderrol for adhd) to counter some of the symptoms of a depressant narcotic. It's actually been great! I have energy again, I wake up and feel like I can last a good few hours before pain sets in, and I actually feel functional for he first time in a long while. She said this is a pretty common thing for chronic pain patients on long term narcotics. I had no idea! But it does help me! It makes me less depressed, though a little more anxious.

As for muscle relaxants, I used to take Valium twice a day when I first got hurt. In the end I think this was a mistake. I think it helps temporarily, but it seemed to make things worse the day or two after. It obviously also made me way more tired and foggy. I take it every once in a while now to help with a free really bad days, but I found that generally, for me, muscle relaxants seem to hurt in the long term more than they help. Flexor did nothing for the pain except making it worse later, and Tizanidine does very little anyway.

Some non standard things I've tried that help. Kava extract in a glass of cold water seems to help a whole lot for about half an hour. You can buy it at a whole foods type store. Just make sure you ask your doctor about potential interactions before you try it, make sure to limit your dosage until you understand what it does to your body, etc. it did help me though, and it's a good alternative to Valium/Tizanidine.

I found that trigger point injections seemed to help, while acupuncture was horribly painful. I also saw an osteopath for a long time. Osteopathic manipulation (like a very subtle musculo-skeletal manipulation from a trained Doctor, not just a chiropractor) can be incredibly helpful, but only if you find the right doctor. It takes on the scale of a year to really make a difference, can be quite expensive, but is usually partially covered by insurance with a referral.

I hope these ideas help a bit! Meds, etc are so different for each person, that finding the right combination seems to be a total art. At the very least, maybe I have you a couple of new ideas to ask your doctor about.

Please please please let me know if anything else helps you! And let me know if there is anything else I can do to help!!

Apr 15, 2016 7:16 PM

Also, it seems like we all have this deep punch in the back feeling. I always thought of it like a cinder block sitting directly on my spine, rather than a punch, because it's sort of a constant deep weight. It feels like my organs are being crushed too. It feels so deep that it verges on abdominal pain. This is the reason I said it's like being kicked in the balls. Of course it's hard to understand that analogy for some. :)

The problem for me is that I'm so hypersensitive that I can't let ANYTHING touch a specific spot on my back. I jump like a scared cat out of sheer reflex and agony. When I'm lying down, this is a real issue. I have to lie on my side and take away any covers, pull up my shirt, and move anything that might touch me by accident. This is the biggest problem for me. I have to rotate between sitting, standing, and lying down in a few choice positions to try to shift the cinder block away from my spine. Nothing really works. It's really hard to explain to people, so it has made for some real awkwardness at work! I've had to lie down in some really important meetings.

I try to sleep with a cover or pillow on between my knees. I've tried buying some pretty expensive memory foam and medical pillows, though nothing quite works, and a simple cotton/polyester pillow seems to be best because of how squishy and malleable it is.

At times, walking with a cane helps me. It's better for me to use a walking stick with a higher place to grip because it allows me to stand more naturally as I hobble along. People used it ask me if I was going hiking...and I had to tell them that I was hiking from my office to my car. :)

Have any of you tried a back brace or some other kind of support? Anything else I'm not thinking of? The grabber is a good idea! I usually just use a stick or say screw it and order takeout. :)

Apr 15, 2016 9:21 PM

JahMac thank you for sharing. You are incredibly strong with a fantastic outlook on life. My heart aches to hear how youth is taken away with terrible pain. While I started having back pain in my 20's it didn't get extreme until I was about mid 30s. I am now 47 and in the last couple years unable to work. I have spinal stenosis in a few spots in my spine and the falling I can understand, me and the pavement had a few meetings. Isnt there anything that can be done to help your breathing? I breathe shallow because big breaths hurt but jeez that is just wrong!

Apr 15, 2016 9:57 PM

Loki...I have tried cymbalta it didn't agree with me. I was on tramadol did nothing. Hydocodone does nothing, my Dr wants me on a fentanyl patch but insurance said I have to try oxycontin first. Morons it is the same thing only time released. I can't take valium. Flexerall et. al. Causes Atrial fibulation (i know someone who at 34 got afib from it) so I won't take it. The dr has said no to a back brace because you become dependant and it is important to keep the muscles strong. Oh speaking of that I do spine and core strengthening exercises from PT every day....ok almost every day. I also have an exercise ball that I try to use as a chair periodically to help posture as suggested by my PT back when I went.

I have places on my spine that can not be touched or it hurts bad. Do you have fibromyalgia too? The sensitivity reminds me of a fibro flare. I am extremely jumpy to being touched my 10 year old son thinks it is funny until he realizes it hurts. Going out in public is a nightmare at times. Last time I was at the store some lady came up behind me and literally spooned me reaching over me. I have a double touch issue one pain and one I freak when people I don't know touch me.

I am on some anti anxiety medication that helps knock me out at night. Not sure it is a good thing because if I don't move enough in the night the pain can be worse that the lack of sleep. I also use pillows and/or blankets trying to lessen pain. I wish I could take my arms off at night because I can't figure out how to get them comfortable or keep them from falling asleep.

I heard of kava years ago I think it was for another purpose though. With all the drugs I am on I don't try anything my Dr doesn't give me an ok on.

I am on gabapentin 300/300/600. After being on it for an extended time the fog from it seemed to lift, I have fibromyalgia fog so that was a bad foggy period. I also get a fog when the pain gets bad. Do you get that?

Headaches...do you get those? I have multiple types...behind eyes...one that comes from the soft spot in the back of my head, one that is like a 70's sweat band...the list goes on. Nothing seems to helps them.

Apr 15, 2016 10:10 PM

Oh and constant painful spine popping do you get that?

Apr 16, 2016 3:19 AM

Thanks Loki... and steal away, I just say what I feel! I'm 36 next month and yes I'm still young, i think because I've always had something wrong with my back and have had some sort of pain through out it tends to make you feel older than your years a lot of the time. Shammagren- with my breathing there isn't anything they can do, with spinal cord injuries in the cervical spine it can paralyse your diaphragm to the point of having to be on a ventilator 24/7. When I was first injured and in hospital, I was on a ventilator, but with all the rehab I had, my body was able to cope without the ventilator eventually. I have a little instrument that is basically a resistance breath trainer, I use it to keep my diaphragm as strong as it can be, whilst helping with my strength of breath, not breathing to shallow. I was in a neck brace and thoracic brace for almost 15 weeks when I was in the spinal rehab unit, that obviously served its purpose at the time, I don't need to wear them now. I have get evil headaches but that is normally down to AD(Autonomic Disreflexia) because I'll get sudden spikes in my BP. Pre my injury, I was on Gabapentin first and then Pregabalin, but they both were unhelpful and the side effects were awful, I would have very painful and noticeable motor tics, I had one where my neck would jolt up and back,almost feeling like whiplash, so eventually my consultant took me off of them. I use fentanyl patches but we have to be careful as it can effect breathing, so that has to be closely monitored.

Apr 16, 2016 3:31 AM

Dipbop hang in there! I'm impressed you can lie flat at all! I can't really get to that point. At least we have each other now to discuss some of this stuff! It's been incredibly helpful for me over the past couple of days!

One thing that helped me, and who knows--it could help all of you guys--was to get a big recliner with an automatic foot rest/back lean. I found a super super comfortable leather one at Macy's for $500, so it was actually affordable. The motorization is a pretty standard feature now for non-medical furniture, and avoids the jolts from the old lever controlled ones which are obviously problematic.

There have been a lot of nights lately where I can't find a position lying down which isn't intensely painful. Because of that I haven't been able to sleep, sometimes for days in a row. With the recliner, I've found I can sometimes find a more comfortable position in the chair than in my bed! When it starts to hurt, I just adjust the angle a bit to relieve pressure on the part of my back that's hurting in that position.

Maybe this is at least an alternative to having to lie flat all of the time? Makes eating and watching tv easier for me too. :)

I've spent more than a few nights in that thing. :) If anyone wants, I can look up the model number for you.

Apr 16, 2016 4:01 AM

Shammagren-

No one has ever told me it was fibromyalgia. I've been told it's "extreme hypersensitivity", and my pain doc said in on the extreme end of the spectrum out of all of the patients he's seen. That makes me think it's not a simple injury thing, but more of my body's systemic response to being messed with. My nervous system is "out of whack", as I like to say.

This is clearly related to the back pain, but kind of a separate type of pain for me. One is a contact thing, the other is the deep cinder block pain we've been talking about. The contact pain is super weird. My doctor says the density of nerves I have in near the T7-T8 region is about 100 or 1000 times too high. Normal people seem to be able to tell differences between contact about a centimeter apart. I can tell within a millimeter or two (easily!). The irony is that with all of this increased sensation on my spine, other parts of my body have lost feeling (one foot, legs, hands), though this doesn't at all prevent nervy pain in this areas. I've gotten really sensitive to heat lately (I always ask for two cups for my coffee to prevent me from feeling it as much) and definitely more sensitive to loud noises, bright lights, weird smells. I think part of that is from the gabapentin, but I'm not sure.

Man do I hate the gaba! I was taking 400/400/1600 for a while. After switching to Gralise it's 1200 extended release at night and 800 gaba in the morning. I recently got it down to 400 in the morning, and yesterday to zero(!!!) for the first time! This was mainly helping treat acute nerve pain in my arms, shoulder, neck, face. Since the trigger point injections have actually been helping, that specific type of pain has reduced quite a bit, so I'm trying to reduce the gaba in turn. As much as it sucks to go in and have someone stab my neck and shoulder with a needle and juggle it till the muscle jumps and relaxes, it has been incredibly helpful over time at dealing with these "secondary" upper body and extremity nerve related issues.

I'm not sure if I mentioned it here, but he said I had "thoracic outlet syndrome", which usually goes away in a couple of months but went crazy and lasted nearly two years because of my screwed up nerves. This is basically impingement on my brachioplexus (nerve bundle in your shoulder that goes to all of the places I mentioned). The way you describe trouble lifting your arms over your head reminded me of that kind of pain. I lost motor control completely at times, they get numb/go to sleep constantly, and it spread to my left side too at some point. Between this, losing the ability to walk for a few weeks because of sheer nerve pain agony, and the long standing back stuff, the last 2 years totally sucked. I had to cancel a lot of important work trips and spent the better part of 6-8 months in bed.

Anyway, a lot of the motor control has made improvements, and some of the upper body stuff has become a little less painful. Aaaaaand of course it was masking my spinal pain, so the minute it gets better, my back starts hurting like crazy. So that's what I've been dealing with lately.

On thing that helped with arm stuff while sleeping was to tuck a thin pillow underneath my armpit. My doctor suggested it, and it seemed to help a bit.

I've been getting sort of migraines lately, but historically headaches haven't been the issue. I think this is more about my sensitivity to light at the moment. Also, no spinal "popping", but then again my problem isn't really orthepedic, more nervous system related.

Apr 16, 2016 10:05 AM

Loki...side note i have to say every time I type your screen name it makes me think of Thor because my last name translates something to the effect of "the hammer of thor"

I asked about fibromyalgia because my sensitivity seems to be everywhere and the doctors keep telling me it is fibromyalgia. They first told me this in 2009 and I said no really figure out what is wrong. I have 20 plus years record of back issues that got worse after a few car wrecks that were mostly not so bad. Anyway the fibromyalgia diagnosis still doesn't sit completely well with me but sounds like the course of action with meds is the same.

So weird you would mention the heightened senses. Mine started before i was on gabapentin so i dont think there is a connection. They always said it was the migraines but I just have a constant non migraine headache now. I drive people nuts with...omg what stinks can you smell that? I also have light sensitivity and sound sensitivity. For some reason my taste is off. While my body temperature runs 1 degree below normal I am always hot. I will have to think about the touching hot like a cup of coffee but off hand I am guessing I can't handle it as it seems like more often than not I am drinking it Luke warm to cold. I am also the queen of the drops...luckily my kid and my dog are helpful at picking stuff up. Sometime I think i could pass for drunk except I don't drink.

Ironically I started putting a pillow under my arm a few months ago. I always say if we stop and listen to our body it will tell us what it needs but the listening is hard.

I agree a recliner is the most comfortable. I have to bend one leg like half Indian style or have one foot on the floor maybe due to the low back issues to get a little confortable. I have come up with some interesting positions. I can't sleep in it though.

Thank you for starting this post I am learning a lot from this. I am gaining some peace that my crazy list of symptoms is not so crazy after all.

Apr 16, 2016 5:14 PM

That's such a cool last name!! I'm a bit obsessed with Norse mythology. I read the Prose Edda a few years ago (the primary source about all of the Norse gods). It's super interesting because it was written at a time when the Christians had taken over so it had to be recorded as if someone was telling fantasy stories, as opposed to recording the oral history of the gods many people at the time worshipped. Check it out if you're curious. It's pretty interesting.

Loki was the name of my pet chameleon who died a few years ago :(. Loki was a shapeshifter, so I thought this was kind of apropos.

I once asked my doctor about fibro and he seemed to think it was sort of an unhelpful diagnosis because it's a bit of a catch all for widespread pain of a few kinds. His main claim is that he thinks fibro includes a bunch of different syndromes/diseases with totally different causes, so it doesn't exactly help narrow down treatment options. I am totally unqualified to form my own opinion about this, so I just accepted his. It's possible that if I saw someone else they would tell me that it was fibro. I'm just not sure. It's also possible that it changes the list of insurance recommended treatment options, so he may have been trying to protect me from that, as well. On the other hand, if that diagnosis helps you for any number of reasons, I view it as a good thing. I think it has a real set of documented symptoms, and sometimes having a name for them can be very powerful and lead to a better understanding with some doctors. As you said, the treatment options are basically the same as what I've been going through, so for me it doesn't help all that much.

The heightened senses kind of sucks. If an ambulance drives by, it's extremely uncomfortable...same goes for people who talk really loud as a default. If I start getting a headache, it's often related to light sensitivity, so I've spent more than a little bit of time wearing sun glasses inside (and looking super cool in the process 😎).

The pillow under the arm does really help a lot when I sleep. I don't really question why it helps...just am happy that it does. I think putting my shoulder into a slightly different position stretches out some of Nerves that are acting up when I sleep.

I agree! It's been incredibly helpful to compare notes with everyone here! I had a feeling that a lot of the "peripheral" or "secondary" symptoms I've been dealing with are actually a manifestation of the specific placement of my spinal cord injury. Seems like that is indeed the case, at least to a certain extent. Thank so so so much for being open and willing to discuss some of the perhaps uncomfortable details. I think keeping this thread open and adding to it as we each have thoughts, ideas, and symptoms could continue to be really helpful. It also helps a lot to have other people to complain to. :) Misery does indeed love company!

I hope today is a light pain day for all of you!

Apr 16, 2016 6:26 PM

This is a great thread, we haven't had much in terms of Spinal Cord injury, whatever the level or type of injury, so it's great to discuss and compare with you all! Thanks for starting the thread Loki, I often feel like I'm on my own with this type of injury,so I've really enjoyed sharing here.... And I encourage anyone else with SCI's to share if they wish to!

Apr 16, 2016 8:44 PM

Jahmac, I've been thinking about you a lot over the past couple of days. I'm so glad you're sharing with us and glad you feel like you have some people to vent to/compare notes with.

Im hoping that you have some pretty solid tricks up your sleeve for dealing with some parts of a pain-dominated lifestyle. I had a whole set of distractions that used to help a lot (painting is really cathartic for me, playing music, etc) when I was in pain or stuck in my house. A lot of these aren't options at the moment because of the stuff going on with my arms and shoulders, and particularly the reduced motor control.

I miss my guitar, and my paint brushes. I'm trying to get back to them, but it's been hard having some of my most helpful outlets unavailable.

I've watched enough tv for a lifetime (I can pretty much tell you the plot of most episodes of most shows on Netflix and Hulu), and read a lot of graphic novels. (I like ones with painted art and more adult stories. Not so into the superhero stuff.) regular books can be hard for me to read because focusing my eyes for too long gives me a bit of a headache at the moment (pain in the butt!).


Anything else you do for distractions or just for fun? Any mental perspective/mindframe that you find particularly helpful?

How about you Shammagren?


When I first got injured and was stuck in bed, one of the things that helped me the most was teaching myself the harmonica. I wrote this in another post, but I'm going to cut it and paste it here in a second. I was thinking about this for you Jahmac, because:

1) it helps a TON with breathing and diaphragm excercises
2) there is a neck holder that some people use to play while playing guitar. This should be perfect to play without needing your hands.
3) it's soooo much fun!! It's easy to pick up (only takes a day or two to get the hang of it) and I can't tell you how much it helped me.

I know it sounds silly, but this was really really helpful when I was at my absolute worst. If you're interested, I can send you a link to a good beginner one that will hold up to abuse, sound decent, and not break the bank (but also be better than a toy). Just a thought. :)

I'm going to copy and paste my other post now. Please forgive the repetition!

Apr 16, 2016 8:57 PM

How I learned the harmonica:

When I first got hurt, l was totally stuck in bed. Constant pain, constant meds, constant boredom and a serious need for distractions. I decided to teach myself to play blues harmonica. This sounds silly, but it's like a $5-$20 investment for a decent harmonica (l can send you options). You can order one on Amazon and get it in a couple of days. There are some really basic instructional videos on YouTube. After a day or so of messing around, I found I had enough under my belt to start messing around without sounding awful. Then I found some blues jam tracks on YouTube in the right key.

The nice thing about a harmonica is that it's in one key for the most part, so almost anything you play over a chord progression in the right key sounds decent. You get better and better after messing around with it for hours. The nice thing is you can do all of this lying down if you need to, and it helps you get a little exercise (lots of deep breathing) and totally distracts you. It can also piss off your neighbors and roommates if you play late at night like l did, so you just need to time it right.

Blues is all about improvisation, so you'll be able to come up with little riffs by accident that seem to work, and practice them. A ton of random stuff is totally fine too! This is one thing that really really helped me! Within a few months, I was actually decent enough to play with some friends (and even played for a little audience a couple of times.

Obviously this isn't for everyone, but for $5, it might be worth giving it a shot (especially if you're stuck in bed). If it helps, then amazing! If not, you have a new spot covered paperweight! Jahmac, the neck holder makes you look like Bob Dylan (which can be either a good or a bad thing depending on how you feel about him). It was helpful for me to use it at times.


Crazy idea, lots of fun, and maybe helpful?

Apr 17, 2016 10:06 AM

I think you have a good doctor loki, i beieve he has a great understanding of fibromyalgia. I feel like it took years for the spinal issues to be found because the doctors covered all my symptoms with a fibromyalgia blanket so to speak. In my opinion fibromyalgia is a symptom not a diagnosis but don't tell others that. I believe that more strongly after looking at my medical records. I complained of back pain for years in the spots where the mri has shown issues. I also complained of headaches and even though I had no sinus issues they kept telling me it was allergies and at times I was on up to 6 allergy medications. I think it all made me more sensitive to pain and after my spinal tap to have my son by c section all hell broke loose in my body.

It has been a long road but the best thing I did was move from where Samaritan health ran every thing. The doctors were lazy and if one doctor decided something none looked into it more. It took 3 years just for me to be diagnosed hypothyroid and I finally had to get my obgyn to test me for it.

I am pretty much housebound due to pain coupled with the fact I have no income (getting closer to my disability hearing) I go nuts with mental boredum. I have word game apps and a couple other games. I can't afford netflix but I have Tubi tv which is free. Most importantly, after my son is my dogs they listen, never judge and always love me. I try not to look back at all I use to do which is a challenge. I have been trying to pick back up on doing my family history but when I can only work on the computer for short periods it is not very productive. My 2 month long steroid use for autoimmune hives has caused me to cross the pre diabetic stage to diabetic so I have been looking for non bean recipes that are simple to cook for my new diabetic life style. As I also have a hearing coming up with my retirement plan for the disability portion I have that on my mind and trying to prepare for that. I know thier job is to deny me but it is tough they are saying everything is psychosomatic so I have been studying up on all my diagnosis, xrays and mris all which show there are issues. Even my doctor is baffled by it.

My son loves graphic novels. There is a writer of kids ones who lives here locally and was at my son's school. He autographed and drew a character picture in my son's book. Pretty cool.

I agree with keeping this posting open and posting as needed, updates and so on.

Apr 17, 2016 4:50 PM

Shammagren-

Ok, let's find you some good distractions! What word games are you playing? My mom and I play Capitals (though I got bored of it eventually). I have a few really stupid games on my phone that help distract me a lot.

What about painting, drawing, or other crafts? Basically free if you do it right, and really cathartic/rewarding for me personally. Maybe you'll find similar relaxation? For me it's been hard lately because of the motor control issues, but some crafts are easier than others. If you tell me what you like, I can help come up with ideas.

Also, free TV. I think Crackle is free and has a lot of movies. Also, a lot of the networks have apps now with free streaming shows. Lots of commercials, but oh well.

Super addictive and distracting (and mostly stupid) apps: 2048, two dots, puzzle and dragons, blendoku, capitals, bicolor, sature, letterpad.

I can try to look up more that I played later. Also, if you find a word game with a 2 player mode I'm always happy to play (though I play to win when it comes to word games. :P)

And buy a harmonica. Why not? It's stupid and fun and then gets more and more fun as you go. It will definitely distract you!!

https://www.amazon.com/dp/B007IE5QP0/ref=cm_sw_r_sms_awd_-safxb1HJ8JF1

I can send some you tube videos if you buy one. :)

Apr 17, 2016 5:04 PM

Shammagren does you legs forget they are walking n you fall?

Apr 17, 2016 5:13 PM

Kamel I am not sure what happened just like one minute I was up the next I am on the ground. I fell in the shower a couple times too. I would also have uncontrollable movements at times, others thought I was having a seizure. The gabapentin seemed to have taken care of some of it. I still get unstable I hold on to walls, counters ect and use my grab bars in the shower. I have a tendency to stumble over air but have been lucky enough to catch myself or land on furniture. I refuse to get a cane but I might have to look into a walking stick.

Apr 17, 2016 5:16 PM

Loki....ugh no more games!!! I forgot to mention reading is one thing I enjoy. Lately my hands hurt a lot would be nice to find something constructive where I didn't use my hands other than going on walks.

Apr 17, 2016 5:26 PM

Loki- funny you mention music- I played lead guitar, bass,keys and drums and sang... Still have my tele and gretsch and a massive pedalboard..can't get rid of it all, it's too hard... And it motivates me, to try and play again one day. I'm a massive Dylan fan, my dad used to play his records all the time when I was young. I've played harmonicas before, my friend has a full set, but not since I became a quad, so maybe that'll be my new challenge!!!😊

Apr 17, 2016 5:30 PM

Shammagren there is audio books that you can get from the library of Congress for free. Also I use dragon to type and to read to me. Kindle and Nook is another book reader that might help.

Might want to Use the cane and decorate it to make you laugh at what is causing you to use it. That is what I done to my Walker n cane. That cane can help you get up off that floor you just kissed. Been there am there.

Glad the Gaba is helping you. It caused irreversible memory fog and made the bones feel like they were splitting.

To all I try to have a genuine hard laugh at least once a week. Deal with pain later, it generates endorphins that are suppose to help heal.

Doc told me to stop red meats, Gluten and sugars. The funny thing I had done that years before all this due to insulin resistance. Some of the meds have caused non-alcoholic liver disease. Just do your home work before taking what they offer. Which is worse the pain or the life threatening complications of meds.

πŸ‘

Apr 17, 2016 5:34 PM

Prescription Vitamin D helped with me the FMS

Apr 17, 2016 6:45 PM

JaHmac:

This is the one I use:

Hohner Harmonica Holder HH01 https://www.amazon.com/dp/B000EELFTW/ref=cm_sw_r_sms_awd_t0bfxbWTHNS7P

Definitely
worth trying! If you've played before, I'd recommend getting a Hohner special 20. I like D and A for playing blues in A and D (harmonicas are labeled in the key of the 4th, not the first).

I'll bet it'll help you a lot with the breathing, and I know it'll help you emotionally to reconnect with the music you used to love so much. Maybe sometime we can jam! My rhythm guitar is a bit crapoy at the moment because of my hands and arms, but I'll get back into it as soon as I can. I'm way better at lead, like you.

Check out Jason Ricci. He does some truly incredible things on the harmonica. No clue how he makes such a simple instrument sound that complex! He has some interesting lessons for beginners and intermediates on YouTube.

Shammagren and Kamel, I decorated one of my canes too! I painted it and wrapped playing cards around the shaft. I like the collapsible canes because I can just tuck it away if I want to hide it or don't need it at the moment.

I do very much prefer a walking stick because you can grip it higher and it's way way more supportive for your lower back. When I first got hurt, I went to Michaels and bought a nice wooden flagpole for ~$10 and sawed off the knob at the end. Now it's just a really beautiful smooth and straight piece of strong hardwood that I use as a walking stick for next to nothing price-wise. It's about 5 ft tall and super solid and sturdy. You can buy a rubber stopper at the hardware store for the bottom to soften the impact, and even make a grip out of baseball bat grip tape if you want. That's a pretty good crafty project to distract you guys and you end up with something supremely useful!

Everyone, I'm going to be MIA for a day or more because I'm behind on work. I'll try to catch up when I can.

Best wishes on a reduced pain day!! Keep posting!! I'll keep reading!

Apr 17, 2016 6:51 PM

Jahmac, to play over Dylan songs (most folk is in G), you want a C harmonica. This one will be the easiest to play with the neck holder. It's smooth and the plastic allows you to move around without getting cut on the lip.

Hohner Special 20 Harmonica, Major C https://www.amazon.com/dp/B007J49GPK/ref=cm_sw_r_sms_awd_zdcfxbQ0S7R6V

If
anyone wants to try a starter one, here is the one I recommend:

Hohner 1501BX Blues Band, Harmonica, C https://www.amazon.com/dp/B007IE5QP0/ref=cm_sw_r_sms_awd_ZfcfxbVE64AK1

For
$7 you can't go wrong. :)

Apr 18, 2016 7:41 AM

I have broken T7 and it permanently feels like I have been kicked really hard in that area

Apr 18, 2016 9:27 AM

Thanks Loki, I'll have a look into this, like you say, it could be something to really help emotionally but also help with breath control. I'm over in the UK, I have a friend who owns a guitar shop, so may ask him to get me a harmonica. Hope work goes well.

Apr 21, 2016 2:15 AM

Loki...I thought of you in the shower today...my spine pain has been out of control including arm and hand pain and tingling, not being able to take a full breath due to rib pain and heightened back sensitivity. Anyway i take a Luke warm shower because hot or cold bother me... when I got my hair wet the water went straight down my spine and I felt like my spinal fluid was on fire. The pain was so intense I can only imagine if we had decent water pressure I would have screamed for sure.

I have also noticed walking hurts my back. I am thinking or guessing it is more related to the arm movement.

Apr 21, 2016 10:08 AM

Shammagren, sorry to hear you've had Out of control pain recently,Especially with the breathing in and rib pain. It sounds like it's related to your arms, which would probably originate from your cervical spine. Hope you are able to get some sort of relief. Xx

Apr 21, 2016 11:53 AM

Thank you jahmac I can't figure out what happened to cause it to get worse but I agree it is probably my C-spine but funny I am not feeling the worse pain there. my T-spine right between my shoulder blades however is on fire. Hopefully my insurance will approve my pain killers soon. I have almost 200 pills of pain killers that don't work wish there was something better to do than toss them.

Apr 22, 2016 5:43 AM

Whew finally done! Just made the deadline!

Shammagren, I'm so sorry you're having a bad flare up! I can't deal with heat at all these days, and literally dropped my ice offer the other day because I thought my hand was frozen!

Have you tried taking a bath? Assuming you have one, it could be a bit easier on your back. I've had the same problem in the shower. I got a shower head with a cord and basically aim it away from myself whenever possible.

What are the meds that aren't working? I've found that for some reason combining aleve with my pain meds seems to work better when things are very bad. Aleve is neproxin so if your meds have acetaminophen in them it should be ok to double up. Just don't double on the acetaminophen (like mix Tylenol with Vicodin). Aleve seems to work much much much better for me than aspirin, Tylenol, or advil. You only have to take it every 12 hours. My doc said that for over the counter the max dose per day is 3: 2 and then one 12 hrs later. He said for clinical use, they prescribe the same thing as over the counter, but 4 per day: 2 and 2.

Don't get me wrong, this won't help much on its own, but I find it useful to know I can add it on top of my meds when I'm really in pain. Somehow it helps a bit.

I've had a flare up myself. I was doing so well with my arm! I reduced the Gaba a bit, but now I'm back to some really bad arm, shoulder and leg pain. I guess the fans was really helping more than I though. I'm going to have to start taking it again. Boo!

This tends to happen when I have tight deadlines too. I work in really long stretches and am able to somehow focus so much that I don't notice the pain, but then I pay twofold later. This was about 3 days in a row of nonstop computer heavy work, so my posture was terrible, my arm is on fire and dull at the same time, and my hand is pretty numb/losing grip.

I was walking around (more like a penguin than anything else) the other day looking like an idiot trying to kind of punch myself in the hip to give myself a jolt and make my leg work properly. I'm pretty sure my office mates thought I was going crazy.

Crappy, huh. I did just start looking briefly at some papers on the underlying genetics of chronic pain. The basic analysis I did didn't turn up anything striking, but that doesn't mean much. Maybe I'll take a closer look at some of the recorded symptoms and let you guys know if I find anything useful. It does look like chronic pain, even in response to injuries and incidents has a huge genetic contribution, so that's interesting to know.

You guys doing anything fun this weekend? Maybe we can all pick a movie to watch on tv.

Apr 22, 2016 6:02 AM

Lizard lace- sorry I missed your comment when I was away! It sounds like a lot of us have a very similar feeling of being punched in the back or pelvis or of a large weight sitting on your spine. I always compare it to being kicked in the junk (since it's the closest thing I can think of), but as was properly pointed out, only 50% of people can identify w that feeling. :)

We're here to help and discuss stuff if you ever feel like it, so keep us posted on anything that comes to mind. :)

Hope your pain is mild today!!

Apr 22, 2016 6:27 PM

Loki I agree on genetics...my grandma had back issues and bad pain, my dad was hit by a truck when I was 4. He was always in a lot of pain, infact I don't ever remember him not hurting. My dad's brother also suffered from back pain. They say fibromyalgia can run in families I wonder how many were chronic pain not fibromyalgia. I know researching some of my spine issues they can be genetic, one I was born, some are aging and I am not sure the rest. I do know there seems to be some misconception you have surgery, get fixed and go on to be fine. Also there seems to be a lack of information out there.

I have a handheld shower couldn't live without it. The pain of water on my back was new that day so I have been more cautious now. Baths are a no no it hurts to much to get up and down. I can no longer take NSAIDS or a spring products like naproxen they kill my stomach. Perhaps to many years of being dependent on them.


When I was working I would set an alarm to remind me to stand up and move around so I wouldn't get so stiff. I also had a herman miller chair that helped, if your company will pay for one (mine did) it could help.

performance-work-chairs/aeron-chairs.html

Apr 22, 2016 11:07 PM

In my case, (Pre accident) my Stenosis is congenital,and there is a long history on my paternal side where it is rife!! I would have been in a wheelchair at some point soon as my stenosis was so severe so early on in my life, so genetically speaking it's interesting looking at my medical history through the family, obviously we didn't know I would have an accident and become a quad. 😊

Apr 23, 2016 7:12 AM

They say eventually I will be back in wheelchair, then quad then πŸ˜‡... If we cannot get these spurs and Arthritis to slow down. That was told to me 2 weeks ago. My stuff starts at base of my skull goes to the bottom of shoulder blades area all in the spine pressing on the cord. Then again in the lower back down. All the disc in these areas are either blown or bulging with spurs n stones pressing on the cord or nerve root. πŸ˜”πŸ˜­πŸ˜­πŸ˜­πŸ˜–πŸ™πŸ™πŸ™ Gone back to my happy place have a bless day. It I sunny and comfortable out today and will try to get outside and get some natural vitamin D.🎭🎨

Apr 24, 2016 2:47 PM

Kamel- life is hard being quad, but this is my life, I only got the one chance so I try and make every day count. Sure it's harder to do everything but, wouldn't life be boring if it was quiet?! That's how I try to see things anyway,mindset change what has happened to me but I can change how I react to and do things!! Any questions you have about being a quad then please feel free to ask😊

Apr 24, 2016 3:06 PM

How do you deal with the Anxiety JahMac?

Apr 24, 2016 3:09 PM

Are you on a heart lung machine and feeding tubes? They are saying this is my worst case scenario.

Apr 24, 2016 3:29 PM

My level of cervical injury C3/4 and C6/7 are incomplete and my T7/8 are complete so I have partial movement, I was on a ventilator when I first had my injury but my diaphragm is strong enough now for me not to need one, I do find it harder to breath than if I wasn't injured though, so can pick up infections more easily. I have normal food, but I have to have help as my triceps and biceps are very weak and my grip is almost nothing both sides.but I can feed myself with adaptive cutlery. I have a suprapubic catheter and we have to either use digital stimulation or manual(suppositories) and my Carers for bowel care.
Anxiety is something I have most certainly been through, and although I won't say I don't have depression and anxiety to some degree, I definitely am on the other side of a very dark place I was in after my injury.

Apr 24, 2016 4:26 PM

I am grateful to have met you. I am sorry that you are in this situation and glad that somethings have improved for you. Paths cross for a reason I truly believe. I am in that dark place and when I say I am going to find my happy place I am not in a good place or frame of mind. And it is code for my daughter and family to start in contact to help me stay grounded and not gve into the pain and frustration as well as feeling everyone would be better without me.... I try to grin an bare it as they say and try not to give my issues more power than they already have. Go to pain management and phsyc therapy as well as all the other docs.

I have a overwhelming fear that my support team will vanish if I get worse as many have done as this thing has progress over the past 6+ yeas. Even more fear that when my body does decide to finish off my spinal cord in my thorax I will be home or out alone... The bad thing is a simple pat on the upper back causes flare ups of hard to breath heart having spasms an barley being able to walk for days and increased dropping stuff as well as more pain& falls...... The fear of the unknown ..... But glad to know there maybe some hope. I wish th docs knew the root cause of the inflammation that causes Arthritis so to slow this down or even stop it. Thanks.

Apr 24, 2016 5:25 PM

It's hard because everyone is different in how we deal with things, but my biggest lesson learnt was, I cannot change what has happened,I could dwell on what may be but, shit, I might get knocked down and killed by a bus tomorrow, so I Have to make sure I make the most of what I have got in my life, family, friends, care, a roof over my head, quality of life that may not be achieved somewhere else in the world, so I try and be thankful, tell family and friends I love and appreciate them, and make sure I do everything I can.....Yes I'm human and have a ton of shitty days but,that's what makes me human. I don't know what is round the corner, but I know that whatever comes, I will have lived ,loved,laughed and cried when whatever will be, will be😊😊

Apr 24, 2016 8:27 PM

AMEN!

Apr 26, 2016 7:22 AM

JahMac again you have an incredible outlook. So right...it is to easy to fixate on the pain and isses, what we can no longer do and all we have lost that we forget to live the life we have. As I tell my children...as you get older and you look back your only regrets will be what you didn't do so take opportunities and live life to the fullest. We have started creating a list of "to do's" for when I finally get disability.

As an only child with only my 2 kids left as family I can definitely say quality with family is important so many times we forget to tell them what they mean to us.

Yesterday doctor told me my C-spine is causing my arm pins and needles. To me it feels like it comes from my issues between my shoulder blades because it is when I have my arms straight out or above it starts. Does anyone have arm issues from thier T-spine? My hip spot that feels like someone punched me has a knot it is so painful I can't even touch it and clothes hurt. The joys of spine issues lol.

Apr 26, 2016 9:09 AM

Shammagren I think I shared somewhere in one of the other forums my spine is closing in on my spinal cord and nerve roots starts at the base of my skull and goes to the area below my shoulder blades. Cervical though Thorax. All four limbs pins needles and feet hands and brain seem to have a disconnect an I fall and drop stuff a lot. The spine bones and nerves constant pain.

Lower back at the kidney area is where is picks up with server pain to toes again. My PCP thinks that metabolic syndrome plays a part as well.

Apr 26, 2016 6:02 PM

Kamel I have stenosis in my cervical and thorasic with a space between. I also have lumbar issues but not pressing on my spinal cord.

At the end of 2014 I was falling. Not sure if the gabapentin helped with that or I just do less now but I haven't fallen but still stumble and get weak in the legs. The dropsies is what I call it cause I am always dropping stuff. I trained my dog to pick up stuff and my 10 year old helps me too. The doctor told me no bending, lifting or twisting and that is easier said then done. I also have metabolic syndrome.

Apr 28, 2016 9:42 PM

πŸ™‹thanks and prayers TTL

Apr 29, 2016 6:27 PM

Hey everyone. Had a really rough patch over the last few days. Bad flare up, first centered on my back, and then it spread to my arm and shoulder (which had been doing better for a little while). Then one of my legs stopped working again. I hate it! It was constant pain no matter what position I was in, making it impossible to sleep and super hard to get around. I walked with my cane for a couple of days and tried to give myself a Charlie horse (dead leg) to try to redistribute the pain a bit. Didn't work particularly well. My hand grip went to zero and the nerve pain returned twofold. My back has been stuck in this mode of dull heavy pain.

I went back on the gaba in the mornings (had stopped and stuck to Gralise at night for a couple of weeks) and that seems to help. But man do I hate the cognitive effects of the gaba! My short term memory vanishes and I can't remember the right words for things. Makes for really silly conversations. I've also been totally wiped out and exhausted. I wake up as if I hadn't slept at all!

Sorry I've been MIA. I know you have each been suffering along with me, so I hope it hasn't been horrible.

Jahmac, I wish I had your optimism. You seem to have your outlook so well put together! I'm a total mess right now. I thought the leg issues were a one time thing and that the arm stuff was behind me. Guess not.

Shammagren, I don't have any C spine issues that I know of and I have had a really tough time with arm/shoulder/neck/lower face issues. My doctor says its related to my brachioplexus (thoracic outlet syndrome), but who knows. I've had everything from super acute muscle-tearing pain to numbness, pins and needles, and very dull pain. Dripping things is a regular occurrence, and I lose my balance and fall. A lot. Given our similarities in symptoms, I would venture to guess that it's at least possible that your arm issues come from t spine (maybe in addition to c spine?). There could be some component coming from side effects from the meds, but who knows.

Also, btw "Dropsy" is the name of a sickness fish get when you don't clean the aquarium properly. It made me smile to think that you caught dropsy, as well. time to do a thorough aquarium cleaning! :)

Kamel, it seems like we all have at least some of the symptoms you describe in common. From reading and sharing with everyone, I'm learning that a lot of spine related issues seem to involve pain and numbness in the extremities, as well as loss of grip and balance.

I hope you're all having a mild pain day, and that you have something fun to do this weekend. Maybe a good movie or book? I'm going to catch up on some reading since I'll be stuck in bed.

All the best to each of you!

Apr 29, 2016 7:07 PM

Loki sorry to hear you are having a hard time. Wish I had some magical suggestions to help. I suffer from the same type of exhaustion where sleep doesn't help, one of the reasons they say i have fibromyalgia. Pain does terrible things to the body. They tell me to avoid caffeine but honestly it has no effect either way. I hope you find some relief soon.

Dropsy I knew was an old term for edema but I didn't know about the fish. Hope this gives you a chuckle...I am a Pisces.

Apr 30, 2016 5:59 AM

Loki, I think for me, because my spinal cord injuries are permanent, there's nothing I can do that's gonna change it, so I have to accept and move forward or stay in a dark place..... Don't get me wrong, I've had my darkest days when I was in hospital and rehab, and didn't see the point in much whatsoever, as soon as my mindset was switched over, after meeting someone else with an SCI, that changed my outlook..... I have Shit days still most definitely, but I know I have to go with my body. 😊

May 12, 2016 1:45 AM

Hey everyone. What's the latest? I've had some bad times recently but in general I'm hoping things will improve soon. Somehow I've lost 20 lbs in 3 months without changing anything and in a relatively sedentary lifestyle. I went from overweight (>200lbs) to a naively more healthy 180, but because it's so sudden I'm kind of freaked out. Everyone seems to like to point out that they wish they had that issue, but I don't find it funny. It's actually kind of scary since I'm not sure what's going on with my body. My heart rate and bp are up, as well. I'm pretty sure it's one of the meds, but that doesn't narrow it down all that much. Have any of you had rapid weight loss at any point?

Also, I mentioned to my doctor that a lot of us with lower spinal cord injuries seem to have arm and hand issues in addition to leg stuff. He said that anatomically it's not totally clear why that would be, but that he thinks it's because of how we compensate to deal with the lower extremities. Not sure if it's helpful or if I buy it, but I thought I'd share.

Hope you are all having a little less pain today than you did yesterday!

May 12, 2016 5:40 PM

Loki I hope you find out what is causing your issues but weight loss what a great side effect to have. I eat 800 to 1200 mostly healthy calories a day and gain weight or stay the same. I only walk a mile but i don't feel it is safe to cut my calories any further. Anyway I can image the stress over not knowing what is causing the BP and heart rate. Could the weight-loss be a separate issue? I know when I am hurting super bad it makes my stomach hurt and I have no appetite. Unfortunately my body likes being fat and holds on to the weight regardless.

My low back pain continues. On the plus side the fentanyl patch is helping a little. On the minus side They are pretty much chalking my low back pain up to fibromyalgia but it seems I may have some swelling in the sacrum area so the rhuemotolgist wants an mri of my hips before sending me on my way as there is nothing further she can do for me.

I am frustrated as all get out with all these doctors telling me there is nothing more they can do and writing me off. Very frustrating. It is sending me into tears and depression. I guess that is a slight improvement from crying in pain. I haven't been on a whole lot because honestly when I am hurting to a 9/10 I don't like to talk about it and can't handle listening to others tell thier pain story.

May 13, 2016 7:39 PM

That is interesting that you have arm and hand issue at T7/8, as that's low for that type of sensation. Have you asked for further scans in case higher levels are involved? Or it could be something like carpal tunnel? Being a C3/4-6/7as well as T7/8 I obviously have rubbish motor skills in my arms and hand/fingers, but that's a given. Might be worth asking your Doc...😊

May 17, 2016 11:04 PM

Loki where are you? I hope you are doing ok.

May 19, 2016 3:01 AM

Sorry for the silence. Had a few long work days in a row. I kind of have the same feeling about this app when I'm really hurting. While it can help to commiserate, it's sometimes hard to take on the emotional weight of other people in pain in addition to your own. Just know we are all in this together. I've had a few days when I basically shut off my phone and didn't want to read anything from here, but other times it's so so so helpful. I also find it annoying for the app to start spamming me about how bad my pain is if I don't sign on for a day or two. Really bad feature for this kind of app if you ask me.

Shammagren, I'm so sorry about the 9/10 days. Maybe we're on the same pain schedule :). Is it the weather? I do hate the number system for pain. It's so impersonal and calculating. I wish it was a list of animals or something funnier to give us all a smirk. "I'm having a bit of a llama day today. Yesterday was sloth/llama, but it's gotten worse." :)

If you ever need to bitch privately without having to read stuff, you're welcome to text me directly or something along those lines. I'm hesitant to post my ph number publically, but maybe there's some way to figure it out. That goes for anyone here. Just let me know.

The patches are new right? I only have experience with oral opiates, so I'd be curious to know how it differs.

Jahmac, thanks for the suggestions. My doctor thinks it's something unrelated, as well, though not carpal tunnel. He thinks it's thoracic outlet syndrome, though it's been abnormally presenting. I've had a gazillion mris over the years, covering everything from my pelvis to my head, so I don't think it's an additional issue higher up. I do agree it's weird to have t7/8 affect arms and shoulders.

My original injury is kind of a weird story. I'll share it some time when I feel more open. The biggest issue for me is extreme extreme hypersensitivity (like my pain doc said he's never seen anyone quite so over-sensitized) so it's something of a weird case, I guess.

Any luck with the harmonica? I was just about to try playing guitar again when stuff started getting really bad, so I'll have to break out the harmonica again. Also, you're in the UK, right? I've been watching the BBC Musketeers series all week. Have you seen it?

Heading to see my mom tomorrow, so I'll get some much needed tlc and a break from the toxic work environment. Unf I have to take a train to get there, which is always a world of hurt. Usually Valium + Norco= naptime, but this time I really need to get work done so it'll be miserable.

Ok well I hope you're all doing ok and avoiding llama days!

May 19, 2016 4:07 PM

Loki glad you touched base!!! I have to say i am curious about your weird story of your original injury.

The heightened sensitivity is interesting to me. They tell me mine is a bad case of fibromyalgia. I can understand, I guess, the all over achy heightened sensitivity but not the pinpoint excruciating highly sensitive spot a few inches by a few inches (basically my sacrum). I am going back June 1 for a mri on my pelvis.

I think you can turn off the log reminders. Don't ask me to remember how I did it but I don't get them.

As for running same pain schedule maybe we do run close on that pain wave. As for weather unless you are close to Seattle doubtful.

It would be nice to have something other than the smile face unhappy face. Having a 10 year old boy I would say superhero and villains. Like if you felt great and could do it all you could be spiderman. Maybe a bad day could be the joker because it's a joke if your body will cooperate.

The fentanyl patches are new. I am on the lowest of 25. My doctor offered to up the dose but I said not yet. I don't know if I am in total denial about my pain or just worry about pain meds. I go back in a few weeks and will probably ask for the upped dosage. I have to say even at this low dose it helps more than all the other pills I have been given. Down side of patch is sometimes hard to get it to stick and you are not suppose to cover it. I cut the pad out of a bandaid and put it over it if it won't stay on. Also it seems to lose a lot by the 3rd day. On the plus side it is constant no ups and downs like taking pills. Also for some reason I don't really have the side effects that I did with pills. I never liked the pill Rollercoaster but this I like. Another reason it scares me. I know there are those who say you are in pain you need it but I watched what pain and pain relief can do and when it is not enough the lengths people go to, to stop the pain. I will never take enough to get 100 percent relief. Better to keep 25 percent pain so I remember my limitations and don't go searching for more relief.

I hope you have a nice visit and don't hurt to bad.

Loki email seems relatively safe so if you want to email mine is oneslychic@hotmail.com just put your user name in the subject so I know it is you.

May 20, 2016 6:51 PM

Hey Loki, Hope things have eased up a little now? Hopefully you Doctors will figur out what is causing your arm and hands issue. I'm actually in Spinal Rehab for more work on my hand and arm control. It's such hard work,I'm not shy of working hard, but when you have very little tri's and bi's and virtually no fine grip, it can get disheartening. I'm no quitter though, so I will be working my ass off.πŸ‘ŒπŸΎ
Haven't been able yo get round to the harmonica yet. Yes I'm in the UK, but I haven't seen the musketeers programme.
Shammagren- I use Fentanyl patches, mine never stick properly, so my Carers use 'Transpore' tape over it, I have no issue with it being covered over though.

May 20, 2016 8:17 PM

JahMac I hope your hard work pays off for you. Make sure to post updates.

May 20, 2016 9:13 PM

I will Shammagren- obviously I'm awake(it's 3:10am) here in the UK, It's not a good night for me tonight, the nurses have had to attend and manage my blood pressure spiking (Autonomic Disreflexia) because I had a blockage in my catheter....And now my spasms are not playing ball....it could be a loooooooooong night πŸ˜‚πŸ˜‚πŸ˜‚
Hope you are well 😊

May 21, 2016 4:07 PM

JahMac I am sorry you had a heck of a night. You are an amazing person to stay so positive an upbeat through the hell. I have heard of riding it out as a saying but you grab the surf board and hang 10!

May 23, 2016 2:09 PM

Jahmac, I hope you've had some rest and your spasms & blood pressure are improved by now. Hugs& prayers! πŸ™‚πŸ™πŸŒΌπŸ’•

May 23, 2016 4:35 PM

Shammagren and Flappys, thanks for the well wishes. I'm doing better than the other night, just exhausted from all the work I have to do in rehab. It's well worth the sweat and tears though!!! 😊

Jun 11, 2016 11:44 AM

Touching base, how did the deadlines go, and I hope the flare ups settled down @Loki, also any more on the possible Thoracic Outlet Syndrome? @ Shammagren how's the arm and hand pain,has calmed down at all. I think you were just starting out on Fentanyl patches....how is that going? @ Kamel how are you? I hope you are managing with any anxious thoughts about the future and hope you too have had a less 'Flarey' time. You were having issue with dropping things I think, which I know you were worried about. Hope to catchup with you all. I'm still in Rehab, been working very hard and the hard work is paying off, as I can pick up my spoon and get some cereal in my mouth....not gonna lie, it's pretty messy but I'm so pleased with this, downside to it though is spasms in my fingers and forearms, but hell, I'll take on those spasms!! 😊❀️

Jun 11, 2016 9:15 PM

Dipbop and Lizardlace too, hope things are going well for you guys. Any new treatments medications that any of us have tried and the outcome of those or even if things aren't so good right now, remember we are here to offer support if wanted!😊 , Like I said above I've been working incredibly hard, I wanted to say it's been hard,really hard and as I am 'human' I've also had some pretty big lows when I've put in so much effort but to no avail, and I get so discouraged. It's a matter of trying to Balance all the Good and Bad and remembering that you can only do your best. Which is something I have to remind myself Self of continually.

Jun 12, 2016 12:38 AM

I've just driven 3 hours to the airport to get on a 3 hour flight to my pain clinic LOL crazy huh? I am having a week of treatment on T2 - T10. Real time ultrasound guided Physio, a STEPS course and cortisone and radio pulsing injections. I can't wait to see how well it all works. Fingers crossed. When that is under control I will go back again to work on my hips and knees. Chin up everyone. Go find those happy, silly, fun posts when things become overwhelming on this app.

Jun 12, 2016 6:18 PM

Dipbop, where are you going, a clinic or hospital? I've considered a university hospital program.

Jun 12, 2016 6:23 PM

JahMac glad to hear your hard work is paying off. Baby steps...I am sure your mind is ready for your body to take a giant leap.

The fentanyl has helped to a degree in am afraid to increase the dosage because my husband says I am already over doing it and is afraid I will hurt something more. I also had an increase in gabapentin but I dont think it did anything. The hand and arm pain comes and goes with usage. The doctor basically said I need to rest it when it hurts. Most likely the tendinitis acting up.

My father in law and his niece were up from Sacramento this weekend great visit yesterday we took them on some tourist things Kerry park, ballard locks, Fremont troll then Snohomish falls. I ended the night crying in pain. They left early this morning and I have slept since. I hate paying the price for a little fun.

Has anyone heard from Loki?

Jun 12, 2016 9:48 PM

No, I thought maybe I would give his email a hit, to see if he is doing ok!

Jun 13, 2016 5:23 PM

Flappys I'm going to a clinic everyday for a week and then one day in hospital for the injections under general anaesthetic

Jun 13, 2016 5:36 PM

Keep us posted on how you do. Hugs & prayers it all goes very well!

Jun 14, 2016 4:47 AM

Day 1 I went to STEPS or Self Training Educative Pain Session program. The first part was presented by a psychologist who talked about acute, chronic and persistent pain, hurt doesn't always mean harm, neural sensitivity and a physiotherapist presented the 2nd part about pacing which I clearly don't do properly. There were three other patients in the session that have had chronic pain for up to 30 yrs some on massive doses of morphine. I felt like the new kid on the block but I did learn that the brain is a complicated thing that plots against us at times LOL It will take time to rewire my thoughts about pain.

Day 2 I was reviewed by the Pain clinic doctor. He has added PEA and Duloxetine to see if that helps nerve pain. He has ordered a full spine MRI and cortisone injections for T3 T4 T5 T6 T7 on the left side only. Subject to change by the treating specialist that is doing the injections next week. So I arrange an appt for the MRI today which they wouldn't do because I have coils on an embolism near my spleen and a stack of screws and plates holding my pubic symphisis together. They want to check my hardware isn't magnetic. I know it isn't but they won't take my word for it and are researching my records. Hopefully tomorrow that will happen.

A patient at the course yesterday told me it took 4 weeks of Real Time Guided Ultrasound to get her abdominals to work. I have just 2 sessions to confirm I can isolate those transverse muscles or the injections won't go ahead. Fingers crossed as that starts tomorrow. I'm quite exhausted and have a lively pain flare. I believe the injections I can choose to be sedated or not. Any thoughts?

Jun 14, 2016 7:06 AM

Dipbop, I would elect to go ahead with sedation. Those injections hurt anyway but with the number of levels that they are planning on doing, you might want to seriously think about it. I did my last set of facet joint injections awake and without sedation and to this day, I wish I had never done that. It felt like somebody had really seriously punched me HARD on L4 and L5 but then again she did both sides.

Jun 14, 2016 1:56 PM

Amanda thanks for the advice I think you're right about the sedation

Jun 14, 2016 4:58 PM

Probably just me, pre my SCI I had lots of facet joint injections, I found they didn't bother me at all, but then I've never had problems with needles even the 8+cm ones, I like to feel the pain sometimes as it's different to the everyday we are used to, and it makes me feel ALIVE!! Now it doesn't matter as I'm paralysed from the armpit down

Jun 15, 2016 10:48 AM

Dipbop, this sounds promising. I'm praying it works well for you! I ditto Amanda on sedation, but then I hate needles. Lol. I have titanium plate & srews in my neck along with 11 titanium coils in my abdomen. I've had multiple MRIs & CTs since, with no problems. Hugs & prayers! πŸ™‚πŸ’•πŸ™πŸŒΌ

Jun 17, 2016 1:03 AM

Dip bop, I hope the injections work well for you and you have some relief from pain. Let's hope they hurry up and check up about your rods and screws, that should be something that is prominent in you notes when having an MRI you would think.😊

Jun 17, 2016 5:39 PM

I had the MRI done. Geez they take ages, don't they. I got told to stop swallowing because I was mucking up the cervical spine scan. I didn't know I was doing that. It was so claustrophobic I closed my eyes and took myself to another place. I asked for the films because the doctor reckons the CD isn't clear enough on the computer. The radiographer got shitty about that but too bad. The anaesthetist office rang today wanting the insurance company to write a letter confirming they will pay for the injections on Monday. I was in the middle of pain management group so I had to ring my hubby to get on to the lawyer to make the insurance company cough up. The topic at the group was reducing stress! LOL The irony hey. My poor hubby was more stressed than me having to chase things up for me. I sometimes forget the impact this ordeal has on him so I make sure I listen and love him up too. I have the weekend to relax and then injections on Monday. I have no idea what to expect really. I am having cortisone with local anaesthetic on the left side at this stage from T3 down to T7. Does it hurt and how long is recovery? I am planning to travel 6 hours home the day after.

Jun 20, 2016 11:38 AM

If they don't tell you, use ice packs, or chilled rice socks/packs (they don't get as painfully cold as ice can be to many of us); on 15-20, off 30, for 24-48 hours, except while trying to sleep. I put uncooked rice in tube socks & knot the end; others stitch wash cloths together & fill with rice; can microwave or freeze. I had pain for 24-48 hours at every injx level, but the rice packs reduced swelling on the nerves. Also move in slow gentle motions to keep limber, but be careful it's movements as needed and not exercises. I did have one series of injx that stayed painful for over 2 weeks. When I returned for follow up the doc moved my next injx up sooner and did something different, and I was fine after that one. Out of 24 injx visits, only 1 was painful for too long... Good results for me. Wishing you all the best, with hugs & prayers! πŸ™‚πŸ’•πŸ™πŸŒΌ

Jul 17, 2016 2:54 PM

Still haven't heard from Loki, hope all is well with him, I think he put his email on here, so may try to catch up that way. How are we all doing from this thread at the moment?😊

Jul 19, 2016 9:06 AM

Keep us posted if you find out Jahmac! πŸ™‚πŸ’•πŸ™πŸŒΈ

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