Where from here?

Lost is the word. I have been a victim of a rare form of arthritis caused by auto immune disease it's kind of a mixture of Ra and ankylosing spondilititis . I would say survivor but I think it has gotten the best of me. It all started 11 yrs ago I went 4 yrs undiagnosed because I was having heart problems and the docs want to concentrate on that first, even when it got to the point I could barely walk. I finally had enough and went to the Mayo Clinic in Scottsdale AZ. Within 3 months was diagnosed with vasal vagal for the heart and sacrolititis left side for my walking problem. They did a steroid shot but no relief. I went 4 yrs in remission after taking naproxen and pain killers for the very few flare ups. Then the right side hit not as bad as the left but still to a point I couldn't move muscle without crying. That is when they start biologic meds. They help but it would have literally killed me from the side affects. This goes on for about 3 yrs. But throughout all this thing all my blood work comes back normal and imagining shows no inflammation but severe erosion. Then 1 1/2 yrs ago I started losing feeling in my feet and had severe pain in my legs. Turns out that I now have poly neuropathy because the arthritis moved into my first four vertebrae. They did 21 steroid shots in 9 months with no help. Then they burned the nerves on left side faucets. I got 1 month of severe pain and 1 1/2 months of relief now I'm suppose to get my right side done but what is the point if it only gives such little results and my leg pain still makes me uncomfortable. Then 3 months ago I started to get really tired like I can't do anything to stay awake. My short term memory is shot. Then two weeks ago I started getting burning sensations randomly throughout my body. I feel like my disease has won and it is only a matter of time before it finishes the job. My docs don't know what to do and then make me feel like it is all in my head but I know the pain is real. I just don't know where to turn. My wife and kids are here for me but it seems like my other family member don't fully understand the extent of the pain. I tell them I can't do things like I use to and I feel as if they think I'm a drama king. I try and do family functions but I am still currently working and I always cancel on them cause I'm just plain tired and wore out. The pain has trippled in the last month and feel like my body is slow shutting down with no medical explanation. So like I said I fight for my family but feel as if I'm losing. I'm defeated and lost....

11 Replies

  • You have everything to fight for and whilst you feel worn out, and understandably, down you have to stay stubborn and have hope that things will improve.

    I sympathise about family not truly understanding. I did a simple 1 page print off of bullet points about my conditions with a few links at the end, and insisted my family read it so they'd getter a better understanding, rather than trying to verbally explain.

    It sounds like you need to rest more, it's tough dealing with medical problems like yours and working too, so stop making plans for a while. Cancelling will only make you feel guilty and worse.

    I can't offer you any solutions to a medical situation that's so complex, but your family loves you. Even if you aren't the husband or dad you used to be, they still love you and if you can't fight for yourself right now, fight it for them.

    Lots of love to you.

    Shell x

  • Mentally I'm strong, I was on disability for 9 months before my work offered me a desk job. I continually push myself but find that I am wore out and my muscles hurt. I've lost 60 percent of mobility in my legs. But if I rest my joints hurt worse. I currently am doing pt on my own, exercise, heat and stem. I have a friend that's a pt that helped me with a work out to slow the progression. I did 5 months of pt with him then my benefits were exhausted. I currently fired my rheumatologist and neurologist due to lack of help and support. My pain management doc set the new docs up so we will see if they can help. Just dread having to explain my long complicated history to more docs. I'm a fighter and would never contemplate the easy way out. It just feels like my body is telling me different. I'm not into institutionalized religion but have faith and strong believes in the subject. I am mainly reaching out because like I said "don't know where to go from here" and the best people to talk to are ones that are affected like me.

  • I'm really sorry to hear about your account of the pain you are enduring. Pain is so difficult to explain to your love ones. Do you have pain clinics in the US? I know some people in the UK wear morphine patches. I think that your pain needs to be more controlled.

    About going out, you should explain to your close family that this is out of question until your pain is more controlled. Do you have any holidays left to take so to have a rest? What about sick leaves? Also perhaps you could ask to be refer to a pain cognitive behaviour.

    I wilt think about you. Take care

  • I was on morphine controlled release but just like most of the pain meds made me a zombie. I would take a lesser dose, endure more pain to interact with my wife and kids. They are my world that and it seems that yeah it would get rid of some of the pain but on bad days no meds would help. Just crawl in bed take my meds and try not to move.

  • Hi - I can't really advise you beyond the advice that ShellyWelly has given you. I can empathise though as I have quite severe neuropathic pain now - it is how my RA started I think. For me it really is the worst pain because it is so invisible and isolating. At least with RA pain there are hot swollen joints to prove you aren't going mad - although it feels pretty mad when you are in it I know. But this pain grips me like a vice and won't let go. Mine is probably due to small fibre neuropathy and part of my autoimmune problems the doctors think.

    What to suggest I don't know. I take it you have tried the nerve drugs such as Amitriptyline, Pregabalin and Gaberpebtin? I do get some relief from Amitriptyline but am having to increase the dosage - which is leaving me very tired. My GP wants me to add in Pregalabin now and as I'm off all RA drugs because of horrible side effects this makes me nervous . But worth a try anyhow.

    I think your family are probably just unable to help you and that's just disempowering and sad for those who love you. But you need to tell them how isolating these conditions are and then concentrate on getting yourself rested as much as you can outside of work. I find that volunteering helps keep me distracted to a degree and also fresh air and gentle exercise - although I'm sure that's not easy with your mix of AS and RA. You are not alone. Twitchy x

  • Yeah been on Indomethicin, lyrica, embrel , humira, naproxen, Gabapentin, prednisone, oxycodone 15 ir, oxycodone controlled release, morphine controlled release and many others. I am currently on amitriptyline 100mg, hydrocodone 10/325, diflocanac 75mg soma 325mg. I try and stay active as much as I can tolerate. I come on this site because it is easier to talk to people that are going through the same thing. Most people don't understand especially for my age.

  • I would discuss with your rheumatologist to replace the diclofenac with etoricoxib. I think it is a better and stronger anti inflammatory.

  • Sounds like you're really having a bad time of it right now. So sorry for you as even with family around it an be a horribly lonesome disease. Is there a local group near you that could help explain to your family? You've made it for 11 years, which shows you're a strong person, so don't give up but keep hoping the docs will come up with something more effective for you.

  • I got nras leaflets on RA and left them around the house for the family to read, I suspect there will be a similar organisation in Canada.

    Sorry to hear what a bad time you are having so sending you warm thoughts and I hope your doctor gets you sorted soon on good meds xxx

  • Read the paleo approach

  • Only thing I could suggest is to go to one of the bigger US based forums (such as the Spondylitis Association of America) and ask the same questions there. I am sure there would be people there who either live in your area and can advise where to get a second opinion, or who are going through the same problems as you.

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