I'm after advice on chronic pain, something I... - Pain Concern

Pain Concern

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I'm after advice on chronic pain, something I can do myself.

Knuckledragger profile image
Knuckledragger

My MRI's shows osteoarthritis in neck lumbar and coccyx. Extreme pain on standing and sitting. All I have offered is pain management however the waiting list is almost a year. Any advice on chronic pain please

14 Replies

If you have an iOS device download the “VIM” app from the Arthritis Foundation. If not, go to the arthritis foundation website. If you are a veteran go to va.gov and download their 83 page report for comprehensive pain management. You must go to the Osteoarthritis Action Alliance, oaaction.unc.edu/, and really deep dive into their site. OA was declared a national medical emergency in the US in 2010 and updated with added importance in 2020. So look at the policy tab for links to hhs.gov and NIIH.gov as each of these sites have reports of over 100 pages of comprehensive pain management that recommends and evaluates all types of treatment to include alternative treatments. Here you will get help but really more support as we relate of personal stories. However, what helps me may not work for you because I have CKD and cannot take NSAIDS. Also, I have had 20 orthopedic surgeries in 22 years and will not have another unless it is a matter of life and death, I’d rather be in a wheelchair. I don’t not want opioids as after my very last surgery I got physically addicted and that was much worse than any surgery. So I use acetaminophen, ice, heat and injections.

So do your own research, become your own BEST advocate, be sure you have a doctor that is top notch and will both listen plus go out of his/her way to help you to the best of your ability. If you do not have that kind of doc switch now! Your doctor will always be your team/care leader and someone you must trust implicitly (and someone who earns and deserves that trust) as they are your front line resource for all information and treatments. Finally, come here to get GENERAL information, links to trusted sites and support when OA and chronic pain drives you to your knees and you feel like giving up cause that’ll happen. Remember we are not specialists or doctors so we aren’t very good with medical advice, medical facts/diagnosis/treatments or even medical opinions. Go to your doctor and start with the sites above and any others recommended by us just stay away from “miracle” cures or any other diagnosis sites like webmd as they will not help. I hope that helps some. My best wishes in your OA journey!

Thanks you so much for your reply. I find just getting somebody to understand helps. I consider myself knowledgeable, having had Osteoarthritis for many years. My GP is very good and very understanding but unfortunately on the UK NHS he is limited in what he can offer. I've found reading comments on this site very informative and I realise I'm not alone with chronic pain. Thank you for the links in your reply, I will certainly follow up on them. Thanks again for your reply. I wish you well in your journey. Kindest regards.

I am lucky in the fact I have a high pain threshold. I was on Tramadol and maxed them every day. I was sent on a opioid cessation course. It was and still is the best thing I have done. It taught me to use mindfulness and distraction technique's and I am now opioid free. I still have pain but I can manage it better. I know it is not easy but I know from my own experience that it is working for me.

Be Well

Thank you for your reply. I'm currently slowly reducing my pain killers as I feel they serve no great benefit. I've been taking them for many years and I think they are more of a placebo at present. I hope the new approaches offered will help in time. Kind regards

My pleasure. I’m sorry I assumed you were new to the disease but I don’t want anyone to go through what I did starting with OA in 1998. I had my first joint replacement in 2003. Left knee after a high tibial osteotomy in 2000 with external device that failed. In 2001 had an internal osteotomy that had to be adjusted an additional 4 time’s through 2001 into 2002. I started that process at 33 years old and had the knee replaced at 36. That was followed by left hip in 2008, right hip 2009, right ankle fusion 2012, left ankle fusion 2013 and other knee 2014. My GP managed pain meds after 20014 and within a year I had a kidney event because he did not do labs while I was on warfin. Damn near killed me with a creatinine reading of 7 and GFR of 6. I was taking 60 40 mg OxyContin and 120 5 mg is oxycodone. By 2016 he had me up to 120 40 mg oxy and 120 10 mg of the other oxy. In 2017 it was 180 80 mg OxyContin and 240 10 mg oxycodone. I went early in 2017 by 3 days and he dropped me. I NEEDED and WANTED to be off all of them but to stop that amount of meds cold turkey out to be malpractice! Luckily at that time I had the means to pay for a Suboxone clinic and in 3 months I was rid of that demon drug. Now they want to replace the first knee again, replace both ankles, rod and cage L3-S2 and rod and cage C1-C5. I actually had an orthopedic surgeon tell me that with all of these I’d be done and able to live “more normally” in 6 years when I am 61. Forget it! I hate the OxyContin but I don’t think I could do those surgeries with only acetaminophen...lol. Plus with everything wrong with me I probably don’t have 10 years after 61 so what’s the point.

My point? I had aggressive doctors who wanted to operate and had all my major OA surgeries from age 33- 47. That is too early and there are many other options now. Don’t have the surgeries that early if you expect to live past 55 because they will all have to be, with current technology, repeated. I have a systematic, genetic problem with OA in nearly every joint available. Someone should have caught that earlier and stopped the surgeries to investigate other options. I was not a very good advocate for myself until 2013 when I was genetically tested and found to be positive so systemic poly-joint OA. By that time it was too late I had 21 surgeries in 15 years and one more to go. I wish I had these websites and reports in 2007 and earlier when they were working on the 2010 classification of OA as a public health crisis. I didn’t but maybe I can help someone now facing similar issues. I sure hope so because I use a wheelchair about 50% of the time now and to heat and ice 4/5 times daily.

Finally, I didn’t mean to type such an “oh poor me” post. I have an issue with folks only affected in one joint who complain how bad the pain is and that is my problem...lol! I know there a many, many folks out there worse off than me so I just want to try to give a little of myself to maybe help someone who can avoid being where I am at 55 years old. Because of the way you asked I assumed you were relatively new to the disease and that was wrong of me to do, you know what they say about ASSUME...lol. However, those websites will be tremendous beneficial to anyone looking for help with chronic pain. Even though you are in the UK most will still be relevant plus the OA Action Alliance has several UK links in resources as well as European, Canadian and Australian links. All will have a comprehensive management plan for our chronic pain. Just today I had a doctor write a script for massage therapy and acupuncture for me as part of my plan so the good information is out there if you are a good advocate for yourself. I, in turn, wish you luck and good tidings in your OA/pain battle. They are all unique because we are all different genetically and what works for me may not work for you. Therefore you have to educate and advocate for yourself. I am sorry for my assumption of my initial reply and hope I did not offend. I’ll be around and available if you need additional links plus there are several other very good contributors on this site, much better than I. My best wishes to you!

God you've been through the Mill and back. I like you will not consider anything that takes years to benefit me as at 64 time is no doubt limited for me. Thank you for advice and I hope some relief is on its way to you.Kind regards

Acupuncture is worth a go

Thank you for your reply. I have had acupuncture with limited benefits. I use a TENs machine and an Acupen, while they will not cure my OA they work as a distraction while in use. Kind regards

Sorry I couldn't be any help. I hope you find something soon.

Just knowing others understand is of help. Thanks

I have psoriatic arthritis that has just wrecked my body with crazy unbearable pain and recently I discovered Australian Dream for arthritis which (really works) in relieving pain in my ankles and both knees and I also have been using for 2 months now (its not cheap) and my Rheumatologist said it was fine and that is Dr. Formulated CBD Probiotics (inflammatory response) for digestive and immune support (this too really works).

Neither of these products are cheap but I honestly do feel relief from my relentless pain with these 2 products as long as Im consistent in using them.

I will a look thanks

Yeah got the same response from the regional pain specialists. Waited 2 years for an MRI then passed to physio 3 times which didn’t work then handed a few photocopies of exercise to do at home. Eventuality diagnosed with Osteoarthritis. Eventually pass onto a pain management program which was interesting and was of some benefit but unfortunately the management program wasn’t specific to those who attended. Will say the real benefit was meeting other people face to face who suffer from pain. In relation to having surgery, I was told they won’t touch me unless I had lost control of my bladder and bowels. So I wish you luck, hope you find what works for you.

Thanks for your reply, it seems we are not alone. If you're UK based there was a program on Channel 5 this evening looking into chronic pain and three sufferers, quite interesting particularly the inplants. Worth a watch on catch up tv.Kind Regards

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