Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group 38 yo with AS and RA and gallstones and uveitis.

Hello,

I have had back problems since I was 20 years old. The majority of doctors didn't believe me and thought I was trying to get painkillers. I didn't get diagnosed with AS until 2014. My lower back always hurts and nothing helps. My upper back between my shoulder blades feels like it is on fire and cramps and fees like some giant with massive pliars is ripping my muscles out of my back.

I have swollen wrists and fingers and toes. My hips and shoulders and Kees hurt all the time. I can't get out of bed for hours every day and I have to really force myself. I still try to walk around and get some kind of exercise.

I also have gallstones and the doctors want to remove my gallbladder, however I am looking to go to China and get this Dr Wang to remove the stones. I would rather do that so I can actually eat a NSD and ketogenic diet. Unfortunately it hurts way too much to eat ketogenic so right now I eat almost nothing. Leaf and apples mostly.

I was 322lbs but I am now 230 over a year and a half. How sad right? I couldn't exercise and all I ate was bread and pasta for years. Once I hit 322 I told myself I had to stop so I have lost close to 100lbs eating vegetables and fruits and fish when I get weak. Although I am sure I am the poster guy of malnutrition. I need to lose about 60 more pounds but haven't been able to thanks to eating prednisone like candy and I hardly digest anything thanks to having a horrible gallbladder.

I am hlab27+
A ginormous rheumatoid factor, ccp, sed rate all through the roof with no signs of getting in control.

I have taken sulfasalazine, methotrexate, plaquenil, some other pills I forgot the name of, also minocycline, and none of it helped over 6 month periods. I am taking humira and nothing is different but I am on the 5th dose. I get infections all the time and then I am fed numerous antibiotics. My insurance won't cover any other biological unless o try humira for some period of time.

My life is a shambles, I am a shell of my former self, and I don't even feel like I have control of my body at all. My job hates me and my passion as a photographer has stopped dead. I am currently on disability from work and doctors are telling me to consider long term disability until they can get me on another biologic that works.

I have been to 5 different rheumatologists here in NM and they all say the same things like it is some sort of cult. I tried acupuncture and naturopaths and spent most of my money on supplements that don't really do anything. This naturopath is surprised the NSD isn't helping, but it probably is because if I ate anything else I would probably look like the C in YMCA permanently.

I have sent in a ubiome kit to test for bacteria and waiting for that. But even if I knew what I had the doctors probably would prescribe what I ask for anyway. I can't find a doctor who will prescribe cephalexen or low dose naltrexone. Even if I call ahead and ask they say no, they aren't proven to work.

So, the majority of my life is spent in bed with Netflix. I think I have seen everything there is on there. I am broke and have no way to leave the state to find better doctors. I am also single and have no family to help me.

Considering selling my beloved camera gear for a trip to Switzerland to get euthanasia. I read that they allow foreigners to do so. I really don't feel like going on because I can't work or do anything I love. I don't trust any doctors here and I don't want to take poison prescriptions anymore that don't kill me right away. Why should I keep paying 8000$ a month for no benefits? Even if it is coming out of insurance.

I don't really know if I have any other options since there are no doctors here that care. Has anyone else experienced such a horrible life?

That's weird, i post this and next morning they call to tell me I have been approved for another biologic. Just when I was ready to quit life. What weird timing.

Things are looking up.

I hope so, been a wild ride for me. I will update later if anyone cares to read.

Hello, groovieknave:

CONGRATULATIONS on Your weight loss! I think if You are willing to accomplish this, You can overcome AS, also.

Yes, I experienced very similar devastation due to AS. The best way for anyone with AS to terminate their lives is with the "Bobby Sands Regimen;" fasting. Once I fasted only 20 days, I was AS-free! Dietary ignorance and NSAIDs got me back on the AS-express, big time.

Regret fasting is not a good way to lose weight, but it is very effective treating AS and myriad other problems. Since You have lost the weight, I believe You would not want to waste the work already begun.

Glad You have been approved for another biologic and although these clever drugs can help with symptoms and some of the potential damage very much, they do not treat the root cause of AS. Diet is key in this regard and so are antibiotics, properly administered (and the right agents).

I am not a robot; that is just a lot of titanium in my spine...(something I HOPE You can avoid!). Are You in Albuquerque?

HEALTH,
John