Kinda Lost

Super frustrated and feeling down lately.

Here's a bit of my story since I've been a lurker for quite some time now and finally jumped in. I'm looking for some help and thought someone might have similar feelings.

My story started when I was having hip pain that would not resolve. After months of discomfort and pain I finally went in and had some testing and x rays. I had a history of neck and back pain but I was in a MVA in 1998 so nothing I wasn't used to. It had become something I just accepted. This was different this time. I was getting no relief. After alot of testing and probing, I was told I was positive for a gene that was common for certain types of arthritis. My Xray showed signs of degeneration but nothing significant for my age and being in my previous accident. I was medically retired from the Navy due to injuries and follow on issues from the accident. I learned to live with aches, pains and stiffness.

After finding I had this gene I thought, well that explains alot. Well pump the brakes, not so fast. Just because you are HLA-B27 positive it doesn't necessarily mean you have a positive case of anything evidently. My Xray and follow up MRI proved insignificant.

Forward 3 or 4 years. I have struggled with pain but was given a steady regimen of pain medication. That made it manageable but I still struggle every day. I finally got into a good Rheumatologist and I was put on Sulfasalazine and Embrel. I was told he suspected AS but we would need to track further imaging studies down the road to know for sure.

I've continued to suffer almost daily. The Biologic medicine helps some but I don't feel normal even on a good day. My issues seem to skip all around my body. Back, neck, hips (alot) fingers, toes and hands and feet. I sometimes wonder what the heck is going on with me. Constant ringing in my ears...probably medication related. Always tired and don't want to do much other than rest...oh, I still manage to work a full time job but it's taking everything I have in me.

My mother is celiac and had RA so I'm sure I've inherited some of this. My dad had degenerative bone disease but we thought that was mainly from having a hard life and not taking care of himself along the way. So I had some of this coming if you will.

Here's where it gets difficult. I have had several significant health related issues in the last year or so. Two kidney stones and a blood clot that progressed into a PE. I was in bad shape and don't know if it was medication related or possibly COVID related. I recovered from those issues but have really struggled for three or four months now with a mid to upper back issue that I can't fix. I've tried everything and I'm miserable. It's like a constant muscle spasm that is punching a nerve. Feels like my back needs to snap and relieve pressure but I can't get relief no matter what I do. Laying down and applying heat is all that I can do to take the edge off. Over a weekend I feel better but when I go back to work it comes right back. I've had PT and chiropractic help with no luck. I was given injections which helped for a short time but it returned in no time. The next step is some sort of nerve procedure.

Don't know if anyone else has had something like this but I'm looking for some help and support. It's just off of my clavicle bit the strange thing is I have chest pain on the same side that feels like a pulled muscle. It's almost like the muscle that is in spasm is pulling all the way around on the front.

The worst part is my wife doesn't understand what I am going through. She thinks in sore from laying around and not being active. She doesn't understand how my energy is sapped from this. She has become very impatient with me and has said some things that really bother me. I feel lost and like no one understands. I've told her she needs to read up on what I'm going through and I've tried to explain but it does no good. We have had a few times where I have felt offended by something she said that seemed insensitive and accusations. This weekend I had a really sore area that was affecting my ability to sit. After driving 3 hours I said something and she said maybe you wouldn't be sore if you didn't lay around all day. When I said I'm in pain and I'm doing everything I can to work a 40 hour week her reply was I work and I hurt too. I can't explain it but it really strikes a nerve when someone says I know what you are going through I have back pain too. Ad if they really think what they feel is anything like this! It actually turns my stomach...it's like someone is belittling my illness.

Can someone help explain to me what I am feeling. I am in physical pain but I am used to that. I'm trying to get over this current issue and I would appreciate any help if someone else has had similar upper back pain and could share their experience. But if someone can offer me help with my emotions and how I am feeling right now it would be a great help. I'm so worked up that my heartbeat picks up just typing this. I'm wondering if there is counseling or something available to help people understand what we are dealing with.

Thanks in advance to my friends in this journey.