Help to treat pain without meds

Hello all, this is my first post. Hopefully someone will have suggestions to help me out.

First backstory. I have a version of muscular dystrophy called Central Core Disease. As such I have a hard time building and keeping muscle. I had a spinal fusion when I was 17 due to scoliosis and hypokyphosis, i'm 47 now. The fusion is complete except for my nect. (the top vertebrae beneath my neck, down to tailbone)
I've been using oxygen at various levels of intrusion since that surgery due to diminished lung capacity. (my back is caved in between my shoulder blades, the hypokyphosis)
In my 30s, thanks to flatback syndrome www.scoliosis.org/resources/medicalupdates/flatback.php I lost my ability to stand upright and became fearful of falling. (I was falling lots) I started using a cane, then progressed to a walker. I was at the stage where I was looking for a mobility scooter, and the stage after that would pretty much be bedridden. I also had to start using a bipap with a backup rate and oxygen bleed at night, and oxygen 24/7.

A few years back I was decidedly unhappy and hurting but decided to do what I could to get back to walking. I have worked hard, (3 years of physical therapy with a miracle worker, who donated LOTS of time for no charge. A truly great person and friend) I've lost weight from a high of 165 to sub 120, worked with a strength trainer to try and get SOME actually muscle built and as such have pretty much kicked the walker out of my life. I'm not using alpine walking sticks. They work, I stand in a better posture and can get about pretty well. Also thanks to the hard work and weight loss i'm back off oxygen during the day (mostly except for the bad days) and only use it with my bipap at night, at half the flow level I had previously required.

Now here is the problem. During the previous 30 years, despite quite large amounts of pain, i've taken no pharm drugs except for aspirins and advils, and very few of those. (I would take them more often but they are so ineffective for the level of pain I have that there isn't much point. Its mostly for the anti-inflammatory effect than pain relief, though removing inflammation does of course help some)
I'm not avoiding rx painkillers out of altruism but because the few times i've tried, I've been lucky to survive the experience. My breathing capacity is SO diminished that anything that dampens breathing is very bad. Anything that I react badly to (upset stomach causing reflux causing gas causing diaphragm to be pushed upward causing an impact on breathing.. Well you get where i'm going with this) Most things I've tried including the advils and whatnot I use sparingly because a minor nuisance reaction for someone else is a major issue for me.

And now, using the walking sticks is causing hand problems, elbow and shoulder problems, in general it seems that pain levels are escalating to the point where i'm having trouble just bulling my way through life. At night my tendons swell up in my hands, trigger finger has started, foot pain.. well again, you get the idea. I suspect I have a newfound case of arthritis (have had it for a while but its kickin my tookus now.)

For a better explanation of my issues you can read here. guidezone.info/walking.html Written a bit ago, but still explains things better than I have here. The pain escalation has been occurring since that post so its not totally up to date.

So finally for the question. Is there anyone else out there managing pain in ways that might help me improve my management of pain, without too much negative impact on my very touchy breathing system? Recommendations? I do have an occasional massage which helps some, acupressure which also helps some. Unfortunately, cost is an issue too.

If you made it this far, thanks for reading my ramble and thanks for any input. Its appreciated.

Thanks for the welcome, its appreciated. I did manage to luck onto some things (vitamin wise) that help. Zinc and magnesium being big ones. If I quit taking them, after a while I get this ache that will not be ignored. Also vitamin d helps, I do the usual glucosamine etc. However, it never occurred to me to actually oh.. Ask at the store!

Where I live its not an easy thing to do. To find my house, first.. go to the middle of nowhere. Then take a left and drive another 8 miles. There is a decent city about 70 miles away (and of course the 8 mile away teensy town) I think I'll see if I can internet interact with a good place. Never heard of the Sunshine store before, but will see if what I can find out from them.

Will have to look into the tens unit too. My physical therapist is no longer in state (due to the way things have been going she ended up closing her place and taking a job with someone else.. Teeny town but plenty of business, just can't seem to actually get paid by medicare etc. At least I fixed things and helped wherever I could while she was working with me. (fixed computers and hydrocolators and such) )
However, most PTs i've worked with have been pretty great too. Not in her league, but i've never met one who wasn't a caring individual.

Will research tens and then talk to my doc and see where to go from there. Truly appreciate the input i'm reaching that point where getting relief is no longer just a wish, its becoming a requirement.

Honestly, I haven't tried many. Way back right after my surgery I was on morphine. IV at first then intramuscular, but I was intubated the whole time. The surgery was rough, doc said I was the first person to ever actually scare him. (they lost me 3 times on the table and brought me back) After being extubated they tried to switch me to oral codeine. (also during this period they realized that whenver I went to sleep I would breathe so shallowly that my heart rate would spike and i'd wake up) Sleeping with oxygen helped UNTIL I took the codeine. Even when awake I had trouble keeping the alarms from going off, and staying awake with a pill in me was nearly impossible. I ended up take _1_ of them, survived but hurt so bad (head) from the affect that I went cold turkey on pain meds entirely. (was bad enough I probably lost a few brain cells.. no tests done but it sure explains lots about me! *grin*)
So at that point I was terrified. I survived without anything for a long time, then moved to Wyoming where I got sick over and over (pneumonia) and the antibiotics would help kill the infection but mess with my systems so badly (the diaphragm thing) that the little sleep I would get had to be in a chair sitting up. Its much much easier to breathe that way.
Lets see. later on, during a really rough patch (on the road to divorce) stress levels were skyrocketing and a doc prescribed xanax. I tried 1. Survived. I cut the next one into quarters. (not easy with the teensy pills) I survived. Couldn't even take those. So again, fear takes over. Despite the pain I _LIKE_ being alive. By this point also my MD had kicked in again and i'd gained weight from around 85 pounds to 165. All of it fat. Between the 2 my breathing became even worse.
I do think the idea of going into a hospital for trials is a great idea, but even there, a mistake might kill me. I prefer to exhaust every single other possibility before taking that road.
Oh, there is also the problem of malignant hyperthermia which is associated with my (and many) forms of MD. Not a big issue though because its only a small subset of anesthetic type substances that can trigger it and its well known how to avoid. Might only affect inhaled anesthetics too but hey. The way things affect me (tend to hit me much harder than other people) my over sense of risk vs reward keeps me steered away from taking things that might even be remotely risky.
I may need to rethink things. Its probably that i'm keeping myself from help because of a 'possibility.' Its hard to overcome 30 years of self management habits.

You know its weird. I take risks in other ways no problem. Used to be a kamikaze atv rider (despite my fusion and md) Still do thngs that may not be the smartest choice because the fun factor outweighs the risk. But meds just seem to be a mental block.

Well i'm off to research and re-evaluate. The fact that I'm actually asking for help is a pretty good indicator that a ) what i'm doing isn't working any more (as Dr Phil would say.. Hows that workin for ya?) so b ) I need to do something different.

Looking into the diets now. Will look up dr Vijay too. I'm currently looking into the MM program in our state. Since my complaint is chronic pain there are expensive hoops to jump through. Strangely enough if I say I need it to put on weight (I'm surely thin enough now) then its easy. So.. hmm you're very skinny, heres some MJ. But YOU claim to be in pain all the time, don't take anything for it because YOU say it has adverse affects? Well no. We need you to trial all these other options FIRST to see if they can be made to work and if not THEN we may let you use the much less dangerous offerings.

Yeah. Insert a small amount of sarcasm. (small?) I've had my doctor and pulmonologist both write letters stating that narcotic/opiates are not an option for me. I could just go the "But i'm so skinny" route but the weight loss was by choice for health reasons, and are at my pulmonologists recommendation. So no I don't want to try MM for weight gain it would be for pain, and I just can't make myself lie.

At this point i'm pretty sure I can get into the program but still deciding if I want to. The pseudo legality of it really bothers me. Not federally legal, state legal, but can't go to national parks, through border patrol (which is everywhere in my state) any federal ground. I know the current policy is for officials to ignore the issue, but policy and legality are different things. So again my backbone kicks in and I resist. The whole MM situation is just a mess right now.

I've tried acupressure and did find a person who was great help. No acupuncture available here, just acupressure. Have tried acupressure with others to less effect but I suspect that the one person is just very good at it. Alas again, they are no longer available. (Like my PT, gone by the wayside)

Am currently in talks with a lady in town who does massage to see if I can get a prepay bulk discount so I can bring it down to a price I can afford. Pretty sure we can come to terms, and that I can exchange work of some type as partial payment so that should help considerably.

Going to look up Dr ViJay, thanks very much for the guidance and reference.

Oh yeah! I forgot about Ultram completely (because I cannot currently take it), but Vickie brings up an excellent suggestion to ask your doctor. Go figure,...it completely slipped out of the ole melon!

I used to take it years ago, and it was wonderful.



M.

Yes, it certainly does help!

Many of us here also are frustrated with that whole "rate your pain on a 1-10 scale" as often, it's just not that simple. So in that regard you aren't alone.

I think you did an exceptional job describing conditions so many of us live with,...I know for myself, I have come to understand there'll never be a pain-free day, and that's okay. As long as I can manage and have resources, I'll find my way.

My history shows that I've often done the same thing when my resources are no longer affective....I would isolate and become introspective,--but not always in a healthful way. I'm a work in progress.

You're asking excellent questions and bringing up some great points to ponder.




M.

Ok, I think I have a beginning plan of action. Diet first.

I've found some information about anti-inflammatory foods, including specifically an anti-inflammatory diet from here www.drweil.com/drw/u/ART02012/anti-inflammatory-diet

I'm going to try and merge that with a fodmap diet to see if I can get my stomach issues under better control. For those interested, the fodmap is an acronym. The meaning and source are here:

The term FODMAP is an acronym, deriving from "Fermentable, Oligo-, Di-, Mono-saccharides And Polyols".
en.wikipedia.org/wiki/FODMAP

Basically if it ferments or can react badly in your stomach, don't eat it. Time to clear out the pantry and fridge. (because if its in there, i'll probably eat it)

Add to this a little more weight loss, and hopefully a regular massage schedule and maybe I can put a dent in this thing.

Still researching Tens units and additional supplements that might help. Anti-inflammatory supplements especially.

Thank you all again for the guidance, WHEN I start to improve I'll post information about what is working for me.

First Sturgis 90% of all medication has a respiratory warning of some degree, 2nd tramadol generally only causes problems with serotonin uptake when mixed with an ssri. Dont believe everything you read, go directly to the clinical trial data to and look at the percentages of occurance.

If respitory problems are a risk factor when administering a narcotics based med for the first time Narcan can be given for an instantaneous reversal.

Hot springs are a great idea and they make a portable jet spa for any tub. Not really expensive and may be beneficial.

I deal with my bad pain days by getting mad!! Most of us use HW and this forum as just as much a part of therapy as anything else!

Thx vickie. I'll revisit the tramadol data and speak with my doctor about the tramadol. Even if I use it short term while looking at other options it would probably be helpful.

I also deal with my bad days by getting mad.. when i have the energy. In fact, some days I get mad to GET some energy. Its not the best method but a nice burst of hormonal goodness to get through the day can be useful sometimes. Adrenalin is your friend.

I was also taught long ago by a very smart woman (who goes by the name of "mom") that even if you are having a bad day, paste a smile on your face and keep it there till it feels real. It helps.