Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@jonc59

Hi!
I've been a long-time lurker of these boards, I feel it's now time to introduce myself.

My name is Jon, I'm 65 & I hail from Upstate NY, near the Canadian border. I'll start my intro with a laundry list of past (relevant) surgeries:
8/06 - C6-T1 fusion
10/09 - L3-L4 Lam.
12/6 -L4-L5 Lam.
5/18 - L2-S1 fusion
9/22 - C4-C6 fusion
1/23 - Left shoulder RTSR
10/23-Rt. shoulder RSTR
2/24 - L1-2 PLIF
3/24 - Right leg perineal nerve untrap
----
So I'm fused top & bottom (C4-T1 & L1-S1), & have been in fairly constant pain since "the big fusion" in 2018. "Severe Central & Foraminal Stenosis" has been mentioned in my most recent neurosurgeons diagnosis.

I've had numerous steroid injections up-&-down my lumbar/SI joints, with limited success. I take Diclofenac 50mg-2x/day, methocarbomal for breakthrough pain, & have been trying to self-medicate with CBD/THC for a while now, also with rather limited success. I've even tried kratom, which really helps but makes me feel wonky, & is unregulated, which makes that option scary.

I really, really don't want to go down the opioid rabbit hole, & after 4 low spine surgical procedures, I'm not sure that we'll be able to cut our way out of my pain.

My recliner is my 2nd. best friend (FYI: my wife is the winner! 😊)

I'm fairly comfortable reclining, but now have very weak legs & radiating pain, I believe coming from SI joints, along with pain & "pressure" @ what I believe to be just above L1 fusion.

Additionally, since an unfortunate stair incident 2-mo. Post right RSTR, my right shoulder is compromised (prone to subluxation, & tingling ranging from my neck, down my scapula, which got cracked during my fall) - this was bad luck, I'm wondering if I farther compromised my C-spine.

So both arms are weak, & it's painful to lift anything but the lightest loads.

In short... Weak & painful arms & legs & low back, along with the accompanying legs neuropathy... but besides that, I'm great! 😁

Seriously, I'm at my wits-end here, trying to figure-out my next move: my thoughts are to try to score a comprehensive spine study (past studies focused EITHER on lumbar OR cervical spine) at one of the major spine hospitals (HHS/NYU-Langone... or of course Mayo, but that's a LONG trip for me). My last surgeon (who describes my spine as "complex"), has graciously offered to assemble a package to present to wherever I choose/whomever accepts my insurance.

My pain mgmt. Doctor seem reluctant to move forward with implanting SCS or intrathecal pump, he calls them "hail Mary procedures", for when everything else non-surgical fails.

I believe myself to be at this point, but I'm not ready to pull the trigger on either, without a full spine study, which I'm willing to travel to wherever, to have performed.

Chronic pain... it certainly is character-building, I feel I'm now reduced to thinking-about only chronic pain - it sucks!

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Sorry, I should have read your post more carefully. Yes, the SCS worked for about 2.5 years, then suddenly stopped. No explanation. I also had the pain pump implanted in 2023. Has never given me an iota of relief. Not trying to steer you away from either one. Just saying that they are not always the answer. I don't know. I am in severe chronic pain. Several drugs help a bit, but not significantly. If I could get opioids, I would likely go for it. We, who are in pain, will sometimes be willing to grasp at any straw to help us. Good luck!

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@sbtheplumber1

@mhpd9 i feel for you I had a L4-S1 fusion in 2023 because of an accidental twist at 3 weeks and a nurse practitioner a week later telling me I can bend, twist , lift up to 25 lbs I went home and bent to dry my lower legs and had a burning in my back that never improved. After 4 surgeons saying nothing is wrong I seen 2 at Mayo Clinic that found out a screw come loose in my back and their recommendation is a pain stimulator which I’m getting the permanent one put in Tuesday. Being fused into the S1 was a mistake it’s affected the anal nerves and if I rub the tailbone the pain goes to the testicles. I haven’t been able to sleep in a bed for over 7 months because of sacrum is so tender it causes my feet to go numb when laying down. I went thru pelvic therapy which helped tremendously. My legs feel like fireworks going off never know which nerves going off in my legs, even the vibration of the bass in church triggered the nerves in my legs. I went from working full time and about falling occasionally when I bent over to disabled at 52 walking with 2 canes or a Walker and can’t pass up a restroom, if there’s not a scooter in stores I have to leave if I walk 150 feet I’m lucky. I have learned one thing don’t give up if a doctor won’t listen don’t stop until you get an answer. I always print out a list of questions for each doctor to look over and one today said it helps them when doing their dictations. I’m on a lot of medication but seem to get quick relief with Salon Pas patches or now I’ve started using the roll-on you can cover more area. I have to see 2 heart doctors, a Neurologist, Pulmonologist, Hearing, Endocrinologist, Rheumatologist, Urologist, Speech Therapist, Massage Therapist, Pain Management, Physiatrist, Water Therapy, so my schedule is full it was at 5-6 appointments a week for several months. I have to Thank God for a loving wife that’s helped me thru all this. Looks can be deceiving as the picture shows I could show and tell we had 1’ of snow or I could show the whole picture that we only had 6” of snow on top of the curb , I know people judge why’s he on the scooter or using a handicap spot if they only know the truth

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I am so very sorry for what you are going through. There is no way to explain to anyone, how this horrible disease is affecting us. I am a believer, and although God hasn’t healed me, he has allowed me to endure. I will certainly pray for you, and others on this site. Thanks for sharing your journey.

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Hi I'm Joyce from the US. Have chronic and severe pain from the colorectal surgery I had about a decade ago. So far, I have not found any solution to eliminate or reduce the pain and I tried almost everything offered by modern day medicine and no luck.

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@heisenberg34

Sorry, I should have read your post more carefully. Yes, the SCS worked for about 2.5 years, then suddenly stopped. No explanation. I also had the pain pump implanted in 2023. Has never given me an iota of relief. Not trying to steer you away from either one. Just saying that they are not always the answer. I don't know. I am in severe chronic pain. Several drugs help a bit, but not significantly. If I could get opioids, I would likely go for it. We, who are in pain, will sometimes be willing to grasp at any straw to help us. Good luck!

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I take opioids with very little therapeutic value.

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Hello, I have had trigeminal neuralgia type 2 for 24 years. My pain is much worse, a recent MRI turned up a menigioma at my skull base. It is not large, but is causing a lot of pain. Any advice?

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Hello. New here. I have all kinds of chronic pain due to a few rheumatological conditions. I'm a "pusher" and work through it until I can't. My life is full but getting smaller. That is typical as we become elderly. Frankly probably more capable than most my age even if I can't tie my shoes or open a jar without great discomfort. Anti seizure medicine, biologics, PRN cannabis and opiates can help. All have downsides, but allow functioning. Quality not quantity. Hard to consider what life will be like in 10 years.

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@skateklister

Hello. New here. I have all kinds of chronic pain due to a few rheumatological conditions. I'm a "pusher" and work through it until I can't. My life is full but getting smaller. That is typical as we become elderly. Frankly probably more capable than most my age even if I can't tie my shoes or open a jar without great discomfort. Anti seizure medicine, biologics, PRN cannabis and opiates can help. All have downsides, but allow functioning. Quality not quantity. Hard to consider what life will be like in 10 years.

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I agree with you.
Hard to stay upbeat lately.

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Hi to all,

I'm 65 and have had back issues for 20 years at least. My last 2 falls to my back is what did me in. I have stenosis in from my cervical to coccyx areas. I have spondolothesis in my low back which makes it difficult to stand straight up and to walk. It has dramatically impacted my social life and anything outside of my home. I've seen 2 surgeons who both said my only option is multiple fusions and I won't have that.

I know I need a walker but I'm just too stubborn to use one. I want to learn to walk upright with better posture. I have been on multiple pain medications since 1998 and currently, Methadone for 6 years. I don't like taking it but I can't imagine being without it.

I've had a lifelong passion for all animals and I still do animal welfare work and have 7 cats we adopted in 2014 as orphans and bottle fed. Needless to say, I spend a lot of time cleaning. I am married but have no children. I guess my cats are the substitute. I worked as a CNA in 3 nursing homes and 18 years in a electronics company. I had to resort to disability in 2000. My heart goes out to all of you

Janet (Iowa)

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@skateklister

Hello. New here. I have all kinds of chronic pain due to a few rheumatological conditions. I'm a "pusher" and work through it until I can't. My life is full but getting smaller. That is typical as we become elderly. Frankly probably more capable than most my age even if I can't tie my shoes or open a jar without great discomfort. Anti seizure medicine, biologics, PRN cannabis and opiates can help. All have downsides, but allow functioning. Quality not quantity. Hard to consider what life will be like in 10 years.

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I'm sorry to hear that you too have to push through but don't push too hard. I also worried about my spine years ago and how it will feel as I age. At 65, it's tough because it's hard facing aging alone and with chronic pain, it's unbearable at times. Can I ask how old you are? And does the cannabis help the pain at all for you? I'm in Iowa where we have some of the toughest cannabis laws so I'm not able to try it. Just curious because I hear so much about it. I hope you take care of your back and push easy.. Janet

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Hello All,

Susan here. About 4 hours ago I got a call from my PCP’s office (it is Sunday).
I had an X-ray of my back last week,and the report says that I have a grade 1 spondylolisthesis L4-L-5 13 mm interval is significantly worse than previous MRI.

I don’t know what to make of this. All I know is standing is painful…

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