Tell me about Chronic Pain

The Something Awful Forums > Discussion > Ask/Tell > Tell me about Chronic Pain

brakanjan: May 26, 2014

Mr Rhodes posted:

I have been dealing with Complex Regional Pain Syndrome(CRPS) for more then four years now. I was injured in a minor accident at work when my hand got caught in a faulty door. Long story made short, I had to wait a long time for surgery due to workers comp bullshit and had several associated complications. The CRPS has spread from my hand into the rest of my dominant arm and the side of my face. I am no longer able to perform the functions of my job as an ATC and have been reduced to a glorified receptionist.

My questions:
1) Does anyone else have experience with this or a similar issue(e.g. Fibro, RSD, TOS, CRPS)?
2) Does anyone else have any relief from a spinal cord stimulator>?
3) Has anyone found any relief from a specific medication or exercises?
4) Does anyone else deal with bouts of frustration or depression over the whole ordeal?
5) Does anyone have any life hacks that make things easier?

1) - I have Ankylosing Spondylitis - Causes severe bouts of pain in lower back and sciatica as well as attacks my eye and gives me Iritis - pain and swelling in the eye and exposure to bright light
2) - I have not tried that.
3) - Took me 12 years to find a medication that works currently on Anti TNF medication that helps lower my immune system and stop it from responding and attacking my back, eye etc.. these enable me to do exercise of which I have found YIN YOGA to be the best for injuries due to its slow nature and pillow support. Any fast paced stuff is not for me.

4) Just before i got this new medication - the train tracks were looking fking mighty appealing and I kept thinking if I was a horse I would have been shot by now. Often turn on those around me too just cannot help it sometimes I just think why are you putting up with this. But then they just remind me I am an rear end and life goes on. Never stop giving up the future is a wonderful thing.

5) Life Hacks are - do what it takes to make you feel right , do not worry about your job , do not worry about the kids , do not worry about the bills mortgage or how you feel sorry for yourself. CHANGE everything possible to accommodate the new you and the rest will follow. It will be as scary as fk but by doing this and getting yourself into a better head space all the other things will follow.

# ¿ May 30, 2014 14:56

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# ¿ May 15, 2024 15:19

brakanjan: May 26, 2014

soap. posted:

I just want to start off by saying it is really comforting to read about other people going through the same thing.

I was in a 65 mph rollover accident a year and a half ago, and I have some (permanent?) nerve damage in my back. The orthopedist said I had stretched nerves in my back and hips, and that I may or may not recover from it. Basically, I can't hold any one position for very long without deep, intense pain (I have trouble even going to the movies--it's funny how the little things get to you), my legs/feet go numb intermittently, and I have shooting pains when I twist at all. I also have a couple of extremely tender to the touch spots on my hips/lower back. I don't have great insurance (high deductible), so I haven't been able to try everything as far as treatments go. I have tried chiropractors, PT, yoga, massage and a variety of painkillers. I really do wish I had a definitive diagnosis, as though labeling it would somehow help.

Marijuana has actually been the best treatment thus far. It takes the edge off and lets me sit/stand for longer than 20 minutes, although the pain never goes away completely. The only downside is I don't like to use it if I'm going to be driving, and the stigma that goes along with weed use.

I do get frustrated sometimes, and I really feel bad about inflicting it on my significant other. He has been really great about it. He does the dishes now because that slightly bent-over position that goes along with doing dishes is really awful for me. I suppose I get depressed too. Part of what gets me though is that friends will forget that I have a problem because it really isn't obvious, and I hate to have to bring it up, and tell them that no, I can't do X thing. It feels like complaining and it is embarrassing. I hate always having to plan things around my pain. I can't even sit at a table for a nice long meal.

Wow, sorry to be so negative. It feels really great to talk about it though; I feel like no one really understands.

A pox on all cinema seats lol. I have literally bought a movie ticket then gone inside and sat down for about 2 seconds before going back and asking for a refund because there was no way I was sitting for 2 hours there (it was a new cinema). Also a pox on modern minimalist furniture tables and chairs

. If this is long term. Learn what works for you and try not to fight to much with your old self with things you think you should be able to do. Learning movement over again sucks but it can be done. As for labeling it helped me I suppose , although I argued with the label for another 5 years in denial and only the last couple of years I tried to embrace it. I have just accepted another full time job and I am now realizing that I will probably have to go back to part - time - just to keep up with my extra mural stretching and health regime. hang in there

# ¿ Jun 1, 2014 22:51

brakanjan: May 26, 2014

In the end I suppose we all try to fight the process. I had to laugh today when my old man texted me that he finally had come to terms with losing his bottom teeth (he is 70) and put it down to old age. So even he is still coming to terms with growing old at 70. I though perhaps it is not to bad I got used to grannies speeding past me at 27. I suppose all comparison is relative to what is surrounding you at present. Nothing is really fixed then is it - in the great scheme of things all things are subject to change

I also cannot smoke weed due to work. Although when I did years ago it never really helped the pain it just helped me get through it.

# ¿ Jun 2, 2014 14:20

brakanjan: May 26, 2014

EA Sports posted:

After about 4 years, I stopped getting sciatica and only ever experienced weakness and numbness. I started exercising on an elliptical every day for about a year.
They work out all the same muscles that you would if you were running without straining your spines shock absorbers. It really loosens and strengthens all the ins and outs of your glutes/ lower back. I felt better but still somewhat weak after this so I started looking for something else. I first settled on squatting everywhere rather than sitting, because i could feel my lower back getting stressed from sitting. this helped me gain back some lost mobility in my hips, but it was damaging to my knees. Eventually I settled on standing all day with a stand up desk for computer use. After doing this for about six months I gained a normal sensation when running which was the first time I have since I was injured. I still have serious flexibility problems (can't do situps) but all in all I feel normal. I truly believe that the root of my lower back success was eliminating sitting from my life.

What is an elliptical and have you tried other chairs - I found a combination of sitting or standing helped but either one held rigid for a long period of time made it worse.

# ¿ Jun 6, 2014 18:10

brakanjan: May 26, 2014

That drat Satyr posted:

You guys are so lucky to have pain clinic doctors that actually treat you like real people and not just another cash cow. My most recent appointment went a little something like this:

I go in, the very first thing through the door is I get to pee in a cup for ~mandatory drug testing~... Then am taken back. The Dr. Come in and makes a little small talk with my husband (incidentally about how OBAMERCARE GONNA PUT HIM OUTTER BUSINESS)

So then, my visit. I've been seeing this doctor for FOUR YEARS and only once, at my very first visit, did he examine any part of my body at all. We sit and he reviews my paper and notices I'd marked on my intake papers that I had a specific issue today - I usually do. And it's the same 2-3 major issues (hands/arises, lower spine, and right shoulder) In all of the time I have brought these concerns to him, they're ignored or blamed on other things.

But I digress. To my appointment.

(Dr.) How're you doing?
(Me) Not so well. I've been having this pain in my arm where the whole side of my hand like... Spasms or something and then all my fingers go numb and draw up into a crab claw -makes hand gesture- It's very painful and is now happening g so frequently that hours of my day are spent doing nothing but holding heat or ice on my hands, both of which seem to help but only a little.

:Well the government says I gave to tell you that you're over weight. The key to living with no pain is to lose weight.

So... What should I do about my hands?

If it hurts to do something, don't do it. If they start hurting, stop whatever you were doing and don't do it again.

Then he leaves the room and the nurse returns with exit discharge papers and my med refills.

This is how all appointments here go - and when the itemized bill comes in from my insurance I just can't figure how ol' 'Bamer is running him dry when he can somehow justify charging $946 for pissing in a cup and putting a dip stick in it.

The paper print out I get at the end of my visit says my actual diagnosis is Myofascial pain syndrome, a close cousin to Fibro. He is currently treating me with the following:

Morpheme 15mg 3x day
Celebrex 200mg 1x day
Tizanidine 4mg/day or pen

I feel like nothing I'm on really works to contain and stop the pain, only dull it and make me so loopy that I don't care or something.

On top of all this other bullshittery, the past few times I've gone, as he walks out he says poo poo like, "This is not a long term solution". WELL SHITBAG HOW ABOUT YOU EXAMINE ME WHEN IM IN YOUR OFFICE SO YOU HAVE AN IDEA ABOUT WHAT MAY BE THE SOURCE OF MY PAIN and maybe THEN we can use a treatment meant for whatever it is that makes my entire body feel like my muscle fiber is going to shred apart at any moment.

You ever thought of getting another doctor. I do not know how hard that is to do in your situation. But If I am paying for them now I literally walk in and ask them all the questions I need to written down on a piece of paper. If they try and end early and I am not satisfied I will tell them I exactly what I am paying them for. If they do not like it - I leave. Saves me more in the long run until I find someone who knows what they are talking about. After 12 years of misdiagnosis I do not take to kindly to people who cannot admit they do not know. I once read an article about this guy doing a study on risk management - especially important after the economic collapse in 2008 - he wanted to find out who had the best way of dealing with risk and wanted to apply it somehow to the investment sector. Anyway, he went to professional gamblers (and I mean pros not ones who remember their winning moments but ones that only look at their losses and analyze how to avoid, prevent or minimize it) he went to lawyers , bankers and a whole heap of professions that involved high risk factors. So he devised this test to test risk and when it came to testing doctors he found that they had one of the worst risk maintenance scores ever - he was surprised by this as he thought here are these guys everyday they have to make a vital decision on many patients all day - so he thought they would be good at it. But he found that they to positive they try to treat something as soon as they come accross it and most have to believe they can help or can cure or fix someone. They failed when it came to cold hard diagnosis and because, unlike the pro gambler, they remembered the positives and did not over analyze the negatives and perhaps realize they could not treat this from day one and refer or suggest alternatives --very little scored high that way. Anyway I remember that now when I deal with them.

# ¿ Jun 8, 2014 20:59

brakanjan: May 26, 2014

That drat Satyr posted:

The big issue is that in North Carolina there's a sort of network thing that tracks all of your doctor.. stuff(?), and I've signed a pain contract with the current doctor I have, and by even going to a different doctor just for a simple second opinion and not seeking any medication at all it's a breach of the pain contract I was essentially forced to sign with this current doctor to receive any treatment at all. Beyond that, I've been found disabled because of the issues I have and therefore have Medicaid and Medicare, and finding doctors around here that take it is a whole circus on it's own. As well, far as seeking a different doctor, I would have to get this one to 'release' me from the contract, or sneak behind his back and potentially get caught 'going behind his back' per se and possibly get put on whatever doctor blacklist bullshit they have statewide to keep people from doctor shopping.

I'm sorry for the huge vent post last night. This poo poo just gets to me really bad sometimes. :/

That is the most fked up poo poo I have ever heard a pain contract with a doctor. OMF. Really sure Hippocrates rolling in his grave. Just WOW. I swear only in America.

You know a few years ago I was going to emigrate there and then I heard horror stories about the labor law but that ......sheesh... dodged a bullet there and they call my country 3rd world.

brakanjan fucked around with this message at 23:32 on Jun 9, 2014

# ¿ Jun 9, 2014 23:29

brakanjan: May 26, 2014

That drat Satyr posted:

It's really a whole pile of bullshit... but there's not much else I can do right now but bitch about it on the internet, so... here we are.

No worries bitch away, I am surprised you are so patient. I have little to no patience for medical systems that fail me. I heard an old story about how Chinese acupuncturists would get their weight in gold if they cured the emperor or they would die. I think about this now and again when I find a bad doc.

# ¿ Jun 10, 2014 01:08

brakanjan: May 26, 2014

Locker Room Zubaz posted:

I have a question: What do you guys do when your pain is a 10 and you can't get it under control?
My pain management doctor has me going to the ER but that seems like an absolutely ridiculous solution to this problem. At the ER they give me a truckload of Dilaudid which helps a lot, but it seems like using nuclear weapons to kill a fly. It's also thousands of dollars a visit and that is just not a sustainable solution especially in the summer when my bad days increase tenfold due to changes in the weather. I have been presented with dozens of other emergency medications ranging from headache abortives to high doses of oral opiates but none of them break the pain long enough that my maintenance meds will get it back under control. At the moment I am just taking those days and dosing myself to the gills with valium and pot and hoping that the next day will be better, which it rarely is.

For 11 out of 10 pain I avoid walking near railway tracks. But seriously for 10 out of 10. It is just me time and bear through it. Do something do everything that helps. I play games or scream or curl up in a ball and feel sorry for myself. My pain is not in my head but my whole body so I try to separate myself from it - er meditatively. Painkillers or Drugs work sometimes but they do not really get me through. Have you ever tried LSD for migraines, I am sure I read an article about that but I will need to dust off some old magazines to find it. But yeah when that super pain comes I have learnt not to fight it just to be a reed in the wind.

# ¿ Jun 12, 2014 02:02

brakanjan: May 26, 2014

Miranda posted:

Reading these posts makes me sad because I empathise with everyone so much. I've had lovely back pain on and off since I was 13 and it's so god drat hard to be taken seriously. For ages they didn't find anything and so, for the last year my rheumatologist has been bombarding me with enbrel thinking maybe psoriatic arthritis/ankylosing spondylitis. But I'm not convinced. So I saw a neuro recently who found a mild bulging disc and desiccation at L5, and did a nerve study to confirm the nerve is pissed. Now we're doing a myelogram to check for anything the MRI missed. It feels good to actually be taken seriously (my rheum did too but I think he was kinda at a loss and enbrel was our last ditch effort. I still can't figure out if it helps or is a really toxic dangerous expensive placebo...)

I relate to the feelings of despair and near suicide on my worst days. Not actively doing something but more, I will just take as many painkillers and muscle relaxants until the pain goes or I fall asleep and if I don't wake up...welp.

My husband has such a hard time understanding. He's such a fit active healthy guy and chronic pain is obviously a mystery to him. He hates me taking pain killers and muscle relaxants. But then expects me to go on a bike ride after a 12 hour shift! He's been better lately though.

So, hugs to all...it's always good to know we're not alone.

Nice one, Hang in there. Enbrel worked for me from the get go. It enabled me to do a bike ride after a 12 hour shift and shrug it off the next day. So if it is not working for you then I suppose do not take it. It took about 3 to 4 months to get the full effect and I have not looked back in about 3 years now. On a side not only once they finally found a fused joint did I take them seriously. But it is hard I was not taken seriously for about 10 years. I really thought it was me in the end , I thought I must be delusional and making it all up.

# ¿ Jun 13, 2014 13:08

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# ¿ May 15, 2024 15:19

brakanjan: May 26, 2014

Locker Room Zubaz posted:

I've tried LSD for the pain and shrooms neither did anything besides make me start tripping while also feeling like dying, needless to say it was unpleasant.

I hate "losing" days to pain and I hate it even more when it is a bunch of days in a row, but I guess that's the way it's gonna be for a while. I just saw my neuro and he talked about getting me into a clinical trial so now I at least have a sliver of hope.

Anyone around here actually been cured/fixed? How hard was it to get back into the real world?

What kind of clinical trail.
I been kind of fixed, I responded well to the meds, was not so much getting back to the real world more I stopped and wondered what happened to the last 10years of my life as I had changed everything to accommodate the pain. Now I am renewing old friendships . Getting used to the idea of doing things normally. I took me a long time to even try something that would normally have triggered my pain. I did not believe for a year that it was working I thought I was just getting lucky lol. Other problems now crop up. You take so much time off because of pain that other normal problems I should have sorted years ago took a back seat. I was depressed for a while not knowing what to do either as I was not fit or healthy enough to even go do the things I used to. But end of the day all those other worries are nothing compared to the pain.

# ¿ Jun 13, 2014 20:17

The Something Awful Forums > Discussion > Ask/Tell > Tell me about Chronic Pain