AS, Pain, Depression taking its toll looking for new ways to cope

Thought about it and thought that just isn't the whole story or struggle. That's not all the madness. Like the pop another muscle relaxer because the spasms in my neck give me headaches and make me irritable but the side effect of being drowsy makes me irritable to. Or telling my doc that my pain is out of control but I'm on hydrocodone that should be enough. And I want to tell her It's fricken not enough. Or taking prescrition NSAID's even though hey one fricken hole in my gut is not enough. And the whole come in for a toradol shot, awesome pain relief, but hey, it does not change the fricken fact that my danged immune system is out of control, so two days later my immune system is marching along and destroying my joints, spine, gut, jaw when I need steroids instead to knock it back. Oh here's the catch on that one when I do get put on danged steroids I end up Manic. Pain or Mania take your pick. So, back at home I have a lazy hubby and son who think I can handle all their problems and always come to their rescue, keep a clean house, fold their laundry, grocery shop, deal with the bills, and still be pleasant with all their ADHD madness. And friends who can't understand I enough problems without listening to them whine when they don't help themselves, and then they wonder why I withdraw. Or they tell me I'm not beating the doctor over the head enough to get through to them that my disease is out of control. And I have no fricking life in me left. I walk around looking like the walking dead, my eyes sunk , just wanting everybody to leave me alone and let me get some "spoons" back.

Like you, I have several chronic health conditions that are constantly at odds with one another.

I get relative control of one condition/disorder and another condition/disorder rears its disquieting symptoms.

I have learned to compartmentalize my conditions/disorders. I try not to look at the big picture of everything that my body contends with. Instead, I focus on one or two of the conditions and try to make peace in finding a methodology of a recognized standard of care and homeopathic care and alternative treatment options.

Perhaps this would be helpful for you. To identify the top two or three symptoms that cause you the most distress and to work with your medical team to ameliorate those symptoms to bring you a modicum of relief and balance.

I have also learned to negotiate with God/Higher Power. I will negotiate with my spiritual support for a lesser goal. Example: If I can no longer run, then I will seek guidance for the ability to walk around the block. In doing so, I am looking to seek and acquire a series of small wins, small victories. I re-set my standard, often lowering it, but experience a boost in morale by achieving a small goal that has value to me.

I am glad that you have the company of companion pets. I have a little tea-cup Maltese, Molly, who is my soul-mate. The bond between us is special. In caring for her, it gives me purpose to strive to live my best life - so that my little dog can have a good life. Let your companion pets help you move away from the darker thoughts that fill your mind. Just looking at my little Maltese makes me smile. She is that cute. I am glad that you can take your huskies' for a walk. Being outside, in nature, always lifts my spirits.

I also am an avid reader. Reading allows me to escape to new destinations and to "meet" new people. Use reading and books as a way to explore new areas of interest that you may have. Reading and books can take you to new destinations.

There is no easy way through the depression that can accompany chronic health. But developing a tool box of activities, interests, and distractions that you can call upon when feelings become more darkened is helpful. Perhaps it is treating yourself to a coffee mocha; practicing some basic yoga postures; progressive relaxation or meditation; practicing mindfulness; watching a NetFlix DVD; using a warm buckwheat pack; lighting a votive candle. Develop a tool box of ideas that you can access when your thinking begins to darken. I keep a list of ideas that help pull me out of emotional troughs and find it beneficial to access.

Feel free to come here to vent and express your feelings and emotions. Processing what you are feeling internally on paper can be quite releasing. You might try journaling is you are naturally taken to writing as therapy.

I am glad you found this little conner of the internet, and hope for you better days ahead.
- Karen -

FF, glad to hear you have a good rheummie on board. Is AS the only AI you are dx'd with? Has Remicade helped the AS at all? Some of the other TNF's are also used to treat AS. I know about Remicade, I was on it every 4 weeks for 3 1/2 yrs because of crohns disease.

By chance are you taking Flexeril for muscle spasms? If so, some people find it too sedating to function during the day. I would insist on being tried on a different one.

I do know it can be difficult with the VA for medical care it depends on the clinic you treat at, some are better than others. I would look into switching primary care drs there, my husband had to do this & was fortunate to get one that is very good.

Like Karen said, distraction & doing some fun things for yourself helps a lot. Once in a while I do a drive thru at StarBucks that is my reward, lol.

Take care.

If you look down below, you'll see I'm also a member of the encyclopedia of autoimmune club as well. You got one area under control, often at the expense of another. One med is prescribed for one symptom, and then another is needed to control side-effects.
'I have so many Drs, that I call them my doc posse. I send and receive texts from some of my Drs more than members of my own family.

You mentioned TMJ issues. I actually had both condyles removed and replaced with titanium joints due to bone fusion. The muscles around your TMJs are some of the strongest in your body. Total joint replacements is a fairly uncommon surgery, with a very limited places to have it done. The consults were all done at large research hospitals, and seeing a chiropractor was a huge NO! Not only for the TMJ issue, but because I have fairly extensive neck degeneration. I was diagnosed with JRA in early elementary school, so there's been plenty of time for the neck to join in on the fun. In edition to muscle relaxers, Valium or Klonpin, dry needling(different than acupuncture) also provides relief from the muscle spasms. Botox has helped, and when I still had the joints, cortisone injections helped a bit as well.

It's very difficult to treat multiple autoimmune disorders, and sometimes your team may need to think out of the box. After being seen at home, I was referred to a research hospital out of state. I'm being treated with protocols that are out of the box, and that my home hospitals will not administer. Yes, I'm still inpatient just about every other month, but I do know my Drs are trying to tailor a treatment plan to the best of their ability.

Unfortunately, I have to drive for more advanced care-one hospital is 3hrs north and the other 3hrs south. I'm blessed to have a great support group to help with both my son and with the drives. My doc posse does a great job communicating with each other, and I'm often copied when they email each other. Text messaging also helps to keep the entire crew in the loop.

I'm sure you know that AI diseases are not to be messed around with. JRA is how everything began, bit if you look below, you can see that almost every organ system is involved. You sound like you need to gather yourself a new medical team.

Biologics are good, but I never had results from them. I was still ending up in then hospital with pericarditis and flareups of the ILD. At one point I had to have fluid drained from around the heart. Just too much inflammation, everywhere. Joints were awful, but organs were worse.

As far as chemo goes, I'm assuming the mean MTX. This is often a first line med, which I actually began in elementary school. It's a proven and fairly safe treatment. It's chemo, but when used in RA treatment, it's at a much much lower dose than used for cancer treatment. As far as autoimmune treatment, the dosage may be raised, most Drs stop around 25mg weekly.

Rituxan and Cytoxan are also chemos that are used, which you may have already tried. Again, dosages and treatment frequencies can be adjusted. Have you tried these two meds?

Statins are being prescribed off-label to help treat autoimmune diseases. Atorvastatin is one med that has shown promise.

There are a TON of options out there.

My point is, please don't give up when it comes to treatment.

When it comes to the TMJ, I highly recommended getting a referral to an oral surgeon. Many say they can fix the problem, but it's a hard and complicated. If you type TMJ into the search option, you'll be surprised to see what others have tried. It's a miserable pain to try and deal with.

I'm not in the VA system, so I'm not sure how hard it might be to think out of the box.

Just don't give up, you deserve to feel better, and you deserve to have as many options explored as possible.

If at all possible push for the pool therapy. You are weightless in the water & have no risk of injury. Warm water is great for the joints.