My arthritis journey.

My arthritis journey.
I was diagnosed in 1999 with widespread OA, accompanying that I was also diagnosed with slowly evolving type one diabetes. I was also found to have a genetic condition: Spondylolisthesis which possibly led to spondylolysis, so ending my working life.
19 years later I was diagnosed with RA. The rheumatologist prescribed DMARDS, but they didn’t work, then he prescribed biologics, none of them worked and the pain got to the point where I could not use my hands at all, couldn’t turn door knobs, tap knobs, use cutlery and the pain was excruciating. The rheumatologist then changed his diagnosis to PsA, adding he had never seen such an aggressive form and possibly I could be suffering from both RA and PsA, it was at this point that I realised how little is known about the disease. Again he prescribed another bunch of biologics which also didn’t work. I then saw a pain management specialist who prescribed Tramadol, then Methadone, then Oxicodone and a few more, the names of which I can’t remember. None of them worked.
As it turned out, this diagnosis turned out to be a lucky break, a very lucky break. In the scans I had following the diagnosis, it picked up cancerous nodules in my lung. Had the cancer not been picked up I would have succumbed within two years. I had the superior and middle lobes of my right lung removed and spent two weeks in ICU. The cancer returned 18 months later to the lungs and lymph nodes and I underwent chemo and radio. 18 months on and it returned again, so more aggressive radio. Another 18 months and it returned yet again, so more aggressive radio. The scaring in my lung is severe and I do have trouble with breathlessness walking up steps and inclines. I can have no more radio treatment due to the scaring and immunotherapy is out due to RA/PsA. The cancer remains, but apparently is stable, whatever that means? I remain eternally grateful to the RA/PsA, if not for it, I would not be here to write of my journey.
In an effort to treat the pain from RA/PsA, I had multiple steroid shots, into wrists, elbows, shoulder, pretty well everywhere, none helped. So eventually I opted for hand surgery, first the left hand to see if it would work. My index and second finger had the PIP joints fused, the ring and pinky fingers received plastic PIP joints, it worked, not only that but the right fingers came good also, 'unusual, but it does happen occasionally' was the surgeons reply. Well as good as RA/PsA fingers can be. Shortly after the DIP joint in my left index went, so I had the surgeon fuse that and at the same time asked him to break the PIP joint and reset it at a better angle. Over the years, the rest of my PIP and DIP joints on both hands have fused naturally. They don’t hurt a lot, but it does make life difficult.
Shortly after I asked a surgeon to scrape and clean my elbows as they were getting painful. The surgeon brought up the scan and actually laughed ‘what’s wrong’ I asked, ‘you have no joints left to scrape and clean’, so that stuffed that idea and I’ve been living without elbow joints ever since. A little while ago I asked my GP what the bone was sticking out the back of my arm above my elbow 'that's the olecranon, but its not supposed to be there' was his answer.
Along the way my cervical spine fused naturally which causes quite bit of pain, I’m no longer able to raise my arms above shoulder height and my arms are permanently bent at a 20-30 degree angle.
Not sure if it was before or after that, but the RA/PsA joined the OA in my hip and I found it difficult to walk, so I had a hip replacement surgery, I emerged from hospital and a month or so later fell over, landing on my hip. Then I was back to square one. The surgeon removed my psoas bursa and released the psoas tendon, that never worked, so he repeated the operation but still it didn’t work. I then sought another surgeon who picked up the implant had come loose, so more surgery and he replaced the implant with a much longer one which almost reaches my knee, no problem since, except I’m now unable to tie my right side shoelaces, can’t get anywhere near my right foot.
Next came numb fingers in my right hand, so off to the hospital again for an ulna nerve transposition surgery, no problems since.
Next came a Cartiva implant in my great toe, that is a plastic button thingy to replace the joint. This worked reasonably well except the surgeon shortened my great toe by about 8mm and left it sticking up in the air, it no longer touched the ground and if bent causes pain, however, I am not keen on having it fused so I simply put up with it and am very careful what I do with my foot.
The rheumatologist said there was nothing more he could do for me, so I stopped seeing him 4-5 years ago. Opioids and cannabinoids offered no relief, so, I also stopped seeing a pain specialist and now go it alone. A funny thing happens when you experience pain 24/7, it becomes the new normal and it no longer bothers me, the mind is the best pain management tool you can employ I’ve found.
I’m 74 now and in a good headspace, sure I experience pain, but it is the new normal and it no longer bothers me. I have returned to the gym after a 35 year hiatus (previously a bodybuilder), having no elbows and fused fingers does not help and I can no longer lift the weights I once did and will never have the physique I once had but I enjoy my gym time.
I still work in my workshop building motorcycles, spannering, machining, welding fabricating, with a little help from some tool modifications, longer handles on some tools, switching to electric screwdrivers, using shorter handled hammers and so on. Dexterity is terrible, I’m forever dropping things, I can’t lift anything too heavy and hammers cause an inordinate amount of pain. Worst of all is trying to pick something small up off the floor, I have to get down on my hands knees, a difficult operation of itself, and using both hands try to manipulate the object so a finger from each hand can come together and lift the object. Life wasn't meant to be easy, but I'm pretty sure picking things up off the floor wasn't meant to be this difficult. On the plus side, I have improved my vocabulary exponentially, unfortunately, my wife forbids me from using that vocabulary in public.
Funnily enough, I now find myself laughing at my inability to perform some functions and often find myself stopping, sitting down and looking at the problem, then working out another way of performing what ever it was I was trying to do. The wife comes in handy too, she's a very good sport and doesn't mind lying on the workshop floor nut in hand, trying to engage it on a difficult to get at bolt. For a while I was unable to use a broom, so my wife would come out and sweep my workshop floor, that morphed into putting my tools away and cleaning my lathe and mill. I have since worked out ways of doing these jobs, but please, don't tell my wife that! If nothing else, this disease teaches you how to use your noggin critically, forcing you to change ways you do things. But its all good, I can now dry the dishes after dinner, all except pots and pans that is.
I manage ok now and I’m in better shape than I have been for years. Exercise is good for OA, apparently it is also good for RA and PsA, despite the pain - who knew? I attend the gym for 1-1.5 hours daily. Every second day I perform 160 various situps in sets of 20, every other day I run on the tramp for 10-15 minutes.
I’m not quite ready to finish my journey yet and with a bit of luck may reach my 80th birthday.