Is your diagnosis for life?

I have it for life, as far as I know. Everyone is different so, to me, comparing this or that is not that important so I will just say that I can relate to what you are talking about. I have been dealing with bad pain since long before any doctor wanted to name it. There is no reason, no explanation, and most likely , when the nerve pills stop having an effect, no help.

@mrmacabre
Are you able to qualify for disability and Medicaid/Medicare? Your income may qualify you for additional benefits above and beyond your wife’s income/benefits from work.

I hear you about dealing with chronic pain. I am a 55 year old female with a teen son. It is really hard for me as a single parent with no family. I am very limited physically and needed to retire early due to disability. Chronic pain/health issues has caused major depression for me which adds more difficulty in functioning day to day. I also struggle seeing my life improve much at all and feel like I won’t live that long as a result. I need to be able to raise my son into adulthood and I’m scared how my health will affect his future.

I try this: “It’s alright Ma, it’s life and life only” -- Bob Dylan

I've been receiving disability benefits since January of 2016, which is almost a 50% loss of income from when I was still working. Imagine losing 1/2 of your income, and then see where you're at financially almost 10 years later. I only have medicare part A because my wife's job provides medical coverage(at a very high price) and we can't afford part B or D.
I had planned to retire at the age of 70, when I would have qualified for all of my benefits, but I only made it to 56 before my body started breaking down and I could no longer do my job.
So yeah, my plans for retirement didn't work out the way we had hoped. Our house would have been paid off, and we would have been okay to retire, but those plans are out the window now.

Living in chronic pain is so incredibly hard especially when no one around you understands what you’re going through. After all, no one else can feel your pain except you. I’ve been suffering from multiple diseases since I was 14 years old; I’m almost 62. I’ve run the gamut of despair and years ago contemplated ending my life, been through years of therapy, numerous treatments and medications, insensitive doctors, and unresponsive insurance companies. I’m not going to list all my conditions; unfortunately the list keeps growing. One day, four years ago, I started to pray to the Blessed Virgin Mary, asking her to give me the strength to bear the pain. My faith has increased and I returned to the Church. I’m resigned to my fate because the truth is this: I’m going to die. I keep doing my best to be as healthy as I can, keep seeking treatments and the best specialists I can find, keep learning about my conditions (because you have to be your own medical expert), enjoy the beauty of nature, and give as much love as I can to my family and others. I pray and live my Catholic faith and I’m at peace.

@mrmacabre
I hear you about loss of income and retiring before you wanted to. I was hoping to retire when I was in my 60s but had to at 54 due to disability. My disability is only 1/3 of what I made and I am a single parent of a teen son (no family or child support). I am 55 now and had no plan to be retired/disabled but I am so glad I started to invest in my 20s and I was able to pay off my mortgage in December. With the cost of everything going up, it is so hard for most everyone, especially those on a fixed income. My cost of cobra insurance is $1,800 per month and going up to $2,200 per month in May. That does not include meeting the high deductible of $4,500 plus 20% coinsurance amounts. I need the insurance because I am having 3 surgeries over the next few months and my son and I have several medications each. I do not know how families are making ends meet.

Do you live in a lower cost of living area? Do you have an option to move in the future when your wife retires? Have you checked into SSI if you qualify for extra income above and beyond disability payments? I was thinking I may need to move to a lower cost of living state because living in New England is too expensive.

My disability benefit would barely be enough to pay the cost of your insurance per month, how in the world do you do that?
We had been in our home for 15 years when we were forced to sell it after I "retired". We had no way of keeping it, so we sold it while we still could.
We live in NW Washington state.

Only thing I have for my pain is at 60 I have a 14 year old that needs me, parents that are in bad shape and a special meeds sister -in - law. I use music been on disability for about 15 years now have pain all the time tried all kinds of meds but don't seem to help. Changed diet and that did help some. Talk to God all day if it helps and never stop.

@mrmacabre Good NEWS is there might be hope! I am a case in point. 30 YEARS I suffered. Another 30 YEARS I watched my aunt and grandmother suffer!!! Turns out no one paid attention. I demanded attention. Went to the BEST Arthritis doctors at UCSD for years... a rheumatologist with the military and a gazillion other doctors, etc....
it was the GOUT!!! There are 3 types: OA, RA and Gout. Dumb #@$% missed the gout... even though I went to the hospital with Gout flares 23 years ago... at age 42 (I am 68 now) because of the family history and most of all because my XRAYS show me LOADED with OA - the lazy #$%! said it was OA. When I complained too much I would get tested for RA. Its soooooo simple: a uric acid level test. I HAD TO ASK FOR IT. In this group someone mentioned ZAZZEE Tart Cherry Capsules and OVERNIGHT my hands stopped being stiff and aching. Overnight I stopped getting whole body inflammation after a little yard work and weather changes. I've posted in this group at extensive length about this UNBELIEVABLE MISS by the doctors for 30 years. If you can search by name maybe you can find some of those posts. Here's the thing. OA is a degenerative condition -- but WHAT CAUSES IT TO BE PAINFUL? That is the question needing to be answered. My initial pain (I figured this all out last fall) was controlled by the Zazzee but my dad was on Allopurinol so I asked to be put on that. My doctor is great at listening to me. So she did. On the tart cherry capsules I was in range but high in uric acid, on the allopurinol I am totally NORMAL. I tested on Friday. I never understood why farmed salmon was considered inflammatory -- ate it and saw no difference between sockeye pacific wild salmon --- but NOW I DO! Had a piece in the freezer I cooked up - every night I wake with pain in my hands. Its the inflammation from it raising my uric acid. So I keep the Zazzee around and pop one of those, and go back to sleep with pain disappearing.
The weather changes do me in - but now I can very much identify the arthritis - OA - in my larger bones like my neck and no pain in my hands/wrists. I am an artist and depend on my hands. No, don't ever give up just take matters into your own hands. Good luck!!!!
I have neuropathies and radiculopathies as a result of spine degeneration. That is another animal. I can control that better if I reduce sugar - another inflammatory trigger. Exercise and the MFR therapist is a must. Learning about my body A MUST. My own unique body needs. A one size fits all doctor is not the answer. Must use your intuition! Must push! Must advocate, prepare and ask questions!!! (required) My doctor says how she admires my preparation. I thought I was her biggest pain in the you-know-what! But I make it easier for her to direct me.

SCENAR therapy worked wonders for me in lessening my discomfort. Let me know if you have questions but you can Google it and see if there’s a certified provider in your area. I wrote more about this in my intro story under our journey with neuropathy. Best to you.