New member, long time sufferer :(
Posted , 8 users are following.
Hi, everyone. New member, but have been suffering from OA for the last 27 years. Started when I was 26 years old as severe pain and swelling in hands and fingers while doing piece work at a factory, and has progressed and spread from there. I had bilateral knee replacements in January 2014, three level spinal fusion in October 2015, and have been on full disability since June 2015. I've been bouncing from ortho to neuro to rheumy and GP for the last solid year. My current MRI from March shows major spinal herniations throughout my entire thorasic and lumbar spines. We'd thought they'd result in a lumbar spinal fusion but after today's final diagnosis, that's not the case. Osteo on top of degenerative disc disease on top of dealing with migraines and hypothyroidism is just getting to be too much.
The wonderful doctor I met with today was very thorough, very straightforward, and very sorry of the resulting diagnosis. He said there isn't an actual treatment available other than managing the syptoms - meds, therapy, and more joint replacement if it gets that bad again. My left thumb joint has already almost fused itself, I guess that explains the severe pain I've been having there. My GP referred me thinking I had psoriatic arthritis because I've started having psoriasis breakouts, but the final diagnosis is osteoarthritis. My neck, shoulders, wrists, hands, spine, knees, ankles, and feet are greatly affected. I was in pain management for the last solid year straight. I'm currently on muscle relaxers, prescription anti-inflammatory med, anti-depressant, and pain meds. I cannot sleep at night even with sleeping pills, am still in pain 24/7, and am literally a shell of my former self. I cannot believe this is what my life has become.
My biggest hurdle at this point is accepting this final diagnosis gracefully and moving forward as best I can knowing it'll only get worse. My husband keeps saying I need to move more, I keep telling him the more I move the more I hurt. When I do too much I also have severe migraine headaches that last up to two full days with horrendous pain, vomitting, and light and sound sensitivity.
My doc wants me to go back to pain management, he thought they may be able to do more for me or perhaps teach me meditation skills. The final treatment they've offered after all the meds, injections, and physical therapy is to have a neuro spine stimulator implanted to see if that would help with my overall pain. I don't know if that's even something to consider at this point, it sure sounds like a gnarly operation to me.
My day is spent basically being a lump on the couch so I don't aggrevate anything if I can help it, my feet hurt so bad I cannot walk on them very much. Even when I do, then my low back becomes excrutiatingly painful and seizes up. I have to find a spot to sit and recover. If I'm in a chair with a low back, then my neck and shoulders start spasming and I'll end up with a migraine. I can't stand, I can't walk, I can't sleep, and I am REALLY tired of saying, "I can't..."
Any insights on how to better manage this mentally and emotionally would be most kind and beneficial. It's wonderful to be in a group that are experiencing what I am and that can relate to the struggles on each level.
I promise not to be such a downer and complainer in future posts, too. I'm generally very positive and upbeat but today's really, really messed me up.
Sammie
2 likes, 22 replies
amkoffee bluetechseeker
Posted
I find it hard to believe that all this pain you're under is from OA. I think if I were you I would continue investigating my disease. I would be using Dr Google a lot even though doctors don't like you to use it. Dr. Google diagnosed me on one occasion where my doctor could not. So I believe that it can help us or at least those of us with chronic conditions. But your condition does not sound like a way to me. At first I wanted to say it was polymyalgia rheumatica but after you continue to describe it I decided that couldn't be it. You might look it up but I really don't think it's that. There are so many other chronic conditions out there that it could be I would start looking at them. If it's ok with you I would like to private message you with a website that might help you with ideas of what's wrong with you but also and even more importantly support. Because I think you're to a point where you need all the support you can get from other chronic pain patients. On another note I would not dismiss the stimulator so quickly. I don't personally have one only because I didn't do well on the test phase of it. And that's because they couldn't find the right spot for me. But my sister-in-law has wonderful success with it for her lower back. And I've known other people to have good success with a too. But I have to be fair and say that I have known other people who have wanted nothing more than to have it taken out of their back. But it is just for back pain. Assuming that's where they're going to put it. Good luck to you
bluetechseeker amkoffee
Posted
Thank you, amkoffee. Yes, I'd greatly appreciate the website information you mention. I'll also look more into polymyalgia rheumatica. I have an appointment on June 19 with pain management and will be specifically discuss the spinal implant then.
constance.de bluetechseeker
Posted
Sammie, most of us don't suffer as much as you do (thank goodness). Your doctors seem to be treating you well - and they UNDERSTAND. Not that it helps your pain but a lot of doctors are just not interested.
There is nothing I can say which will help, except to keep posting on this forum. There is always someone on here who will commiserate/listen - they may have a word or two that will help a little.
Good luck! Try and smile/laugh once a day - it really helps.
Kindest regards fr Constance. 💐💐
bluetechseeker constance.de
Posted
Thank you constance. I just keep telling myself there's always someone else that's far worse off than I am. It's just getting harder and harder to keep upbeat and positive, though thinking kind thoughts and smiling do help to lighten my mood if nothig else. I think I'm fortunate to have found the doctors I have. I have zero complaints on their care, that's to be sure.
amkoffee bluetechseeker
Posted
Please bluetechseeker don't spend your time thinking that others are worse off than you so you should be grateful. Your pain is a personal pain that you experience in a personal way and you should feel brave that you're able to handle it day in and day out.
loxie amkoffee
Posted
bluetechseeker loxie
Posted
loxie, you're very right - it helps tremendously having the support of folks that are in the same boat. You understand the struggles, the isolation, the challenges AND you can understand the small miracles and success' as well! Every bit of accomplishment helps to boost your spirit on bad days, even if it's just tearing open a tea bag or package of sweetener (yes, it's THAT bad some days!!)
constance.de bluetechseeker
Posted
That's OK, if you have torn a teabag, it means you are going to sit back and enjoy yourself for a while.
loxie bluetechseeker
Posted
I feel so sad to hear of your suffering Sammie - heartbreaking. Do please consider the meditation aspect. There are techniques which can train your mind to overcome some of the pain, its not a cure but after all the body's pain receptors are in the brain and it has been proven possible to train the brain to shut off some of the signals. Mindfulness is one of the options but there are many others. Think of the eastern fakirs who can put there hands in fire or pass blades through their skin with no ill effect - obviously that's the extreme end of the scale but it's the same basis - they train their mind to totally ignore the damage/pain and it works. For us in constant pain, it can help to block out the worst and at least allow us to have a life - not pain free but with pain at more manageable levels. I so hope you find some help soon. Lastly, dont apologise or think you're a 'complainer' - those of us who suffer too can relate and to be honest I think you're a very brave person for coping with it.
bluetechseeker loxie
Posted
Thank you, loxie. I greatly appreciate your kind words and encouragement. I think alternative medicines will be my immediate path. I've always been interested in them, and most certainly believe in "mind over matter". I don't feel brave, but appreciate you thinking so. If nothing else, meditation would bring a sense of inner peace while I'm working my way through everything, wouldn't it?
cheryl90571 bluetechseeker
Posted
Hi Sammie!
Welcome to the forum!😊
You certainly have had MORE than your share of pain!
I don't know whether you are a believer, but I will be praying for you! ??Prayer has gotten me through SO many challenges!
Sending prayers to you for calm, strength, and PEACE!??
bluetechseeker cheryl90571
Posted
Thank you, cheryl. Yes, I'm a believer, I'm actually a minister! Every bit of prayer is greatly appreciated.
elizabeth20203 bluetechseeker
Posted
You don't need to apoligise on this forum for your suffering. We understand the frustration of being in constant pain. I cannot really offer anything except i understand constant pain and struggle with walking, standing, sitting and sleeping. I have done the rounds with drugs and had operations. I try to pace myself and gentle exercises. I hope you get some answers and relief soon. Keep talking here and accept any support. Best of luck.
Elizabeth
bluetechseeker elizabeth20203
Posted
Thank you, Elizabeth (that's my daughters middle name). I just ordered a yoga DVD series. I'm hoping to be able to do some of the easier exercises. If so, that'll also help boost my self esteem
Gloria814 bluetechseeker
Posted
My thoughts and prayers are with you, Sammie
bluetechseeker Gloria814
Posted
Thank you, Gloria. I'll be coming here regularily from this point forward. I very much appreciate your support, thoughts and prayers.