Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group so bummed...

I've taken 2 Humira shots and i still haven't felt a difference...i'm sick to my stomach ALL THE TIME. my rheummy gave me some nausea med but i still have to drive if we go anywhere because i get sooooo sick. and i've literally been eating a third of what i used to eat and i haven't lost ANY weight...if anything i've gained some...i don't know what to do...cuz i need to loose weight to help my back, i can't really go walking because i'm in crippling pain after about a half a block...i don't have any money to join a gym or even somewhere i could swim...i'm so depressed...i just don't know what to do any more...i sleep all day because i have nothing better to do, except that when i finally do get up i'm so sore i can barley move...

Sorry to hear you are felling so badly.
I am in a very similar situation regarding weight.
All I can sugest is to do as much stretching as possible.
I have found leg lifts are great. It hurts the back quite a bit while you are doing them but later it does feel a lot better.
Even laying down and throwing a ball in the air and catching it helps to raise the heart rate and keep shoulders and chest loose.

Thats all the advice I realy have sorry.
But sending good vibes your way and lots of hugs.
Hope you start to feel better soon

Trish
xx

OMgoodness I'm sorry you feel so bad. Please don't kick me for saying this, because you've probably already heard it... but is there any way you can get into the water and get some exercise? My exercise physiologist told me that as long as I'm in the deep end, either treading water or swimming laps, it has the same effect regarding muscle work and stretching out. Also, it makes me HUNGRY! Peace

Hi pnkstar:
I am so sorry to read your story.. I used to be one that could do all kinds of exercises and work outside, but now all i can do is just barely walk close to mile and I am on a stretching program all to keep me limber and flex able. Maybe somebody could help get you on some sort of stretching program that would help you. As I look at the both are there for my own good and safety...
Good Luck

Cwbydgs

Pinky

Hope you are feeling better soon.

I know it's hard to feel good about yourself when you are not feelin well. Don't feel guilty about not getting alot done, just do what you can do. Don't try to do everything at once...take baby steps. I used to go to the public pool in the summer and I only paid a couple of bucks. Sure I had to put up with the kids but it was alot of fun watching them play and having so much fun. It helped with my mood too. Have you talked to your doctor or rhuemy about how you are feeling? Maybe they need an update. I know it took along time to get just the right medication combination so I could lead a somewhat normal life without feeling like I had the flu everyday. I wish I could be more help than that.

Take Care

I feel for your plight! Do not give up or allow this monster to take over. Will yourself to do something and think of things you love , and try something, anything. I do sommething called Seamm Jasani or Tai Chi. Easy movements, you can look them up online and find out little things that you can do.

Peace

pink, so sorry to hear how bad things are.

when i spiral down so far, it can be really hard to get up out of that hole, but i do think with the help of doctor's and PTs, often it can be done.

so my first thought is maybe getting a doctor to help with the symptoms, i've found physiatrists to be the most helpful for me personally for the musculoskeletal stuff, they're the ones that have given me SI cortisone injections, triggerpoint injections, muscle relaxants, etc. but then again, i also have a podiatrist for my feet because at times they can be their own special nightmare and only my podiatrist can help me when others can't. i also have a gastroenterologist for when my stomach (and sometimes bowels) go through a particularly bad flare. i also have gone to orthopedists and hand orthopedic surgeons when i have a specific issue, especially with my wrists. i have an endocrinologist who has been helping me to get everything balanced to just help as much as possible. have been to a dermatologist for a few weird "rahses" (psoriasis?). and PT, i've been in a lot of PT. honestly, without all of these doctor's helping me out, i'm pretty sure i'd be home in bed; my physiatrists and PTs have told me this on more than one occasion.

i still can have flares where i'll be a real mess, the last one this past fall/winter lasted 6 months, mostly housebound and mostly out of work, but have gotten back to "my normal", and it was by far my worst, never missed work for an extended period of time like that before. hope to never do that again.

so my first thought is to maybe get whatever doctors you can to help you and get a good PT. i started that route because initially we all thought it was just a lot of "bad luck". til too much became involved and it was pretty clear no one is that "unlucky".

as for your stomach. actually for me, the first problem i had was gastrointestinal. that hit me at age 29-30, while the musculoskeletal stuff hit at the age of 35. my stomach was so bad it took 3 years before we got it under control. for me it is gastritis. ulcers run in my family. what helps is taking prilosec and eating frequent small meals. i kept a food / symptom diary and from that was able to tell that a few things were off limits, for me that would be: caffeine, anything too acidic, underripe fruit, too much dairy. since everyone can be a bit different here, a food / symptom diary can be so helpful. also i found that i do not have reflux/GERD/heartburn, so peppermint is really good for my stomach and bowels. ginger is also really good for the stomach, especially the nausea that comes with gastritis and ulcers. i have ginger herbal tea every day to start my day and often to end it. and i always eat a snack right before bed as the thing that bothers my stomach the most is it being empty, when its bad, nighttime while i'm trying to sleep is the worst. during those times i also take a little mylanta before i go to bed. and when my stomach is really bad, so are my bowels. refraining from roughage helps me there.

does the doctor think you have gastritis or an ulcer? does eating help or bother your stomach?

as for eating less and gaining weight. my whole life til i reached my late 30s, i had no problems with my weight. but diabetes runs in my family and i was becoming prediabetic, and the pounds just went on in the worst place, the middle. i learned its not so much how much i ate as what i ate. so now i eat almost no complex carbs and continue to limit my sugar which i've had to do my whole life. by eating lean proteins, nuts, veggies, fruit in moderation (not juice as too much sugar, and very limited dried, again a lot of sugar), good fats, moderate dairy. and getting the exercise, i was able to get both the blood sugar and cholesterol under control. the weight is still hard to get rid of but i think i'm a bit healthier so i just keep trying.

as for not being able to exercise. there was a year when i pulled a tendon ligament that attaches at the hip and i couldn't do anything for an entire year, that's when my sugar, my lipids, my weight really got out of control, so i understand that one. when i'm at my worst, especially when my SI joint is really really bad, like you, walking is very difficult, and swimming also. but i have found that no matter how bad my SI joint is, i can bike (so long as my knees aren't acting up which they sometimes do). usually i can ride a regular bike, but when things are really bad, i need to use a recumbent bike. i can sit in the seat ok, have my back supported, and my SIs aren't bothered too much and just pedal. i can even put an icepack behind my SI or back while i'm doing it if i need to. and if i get bored with the recumbent exercise bike, i can listen to music, watch a video, read even. its the one thing i was almost always able to do. now i can walk and bike, but not much else, but at least i have those two things.

and like most people have noticed, the longer i lay or sit, the sorer and stiffer i become. it sort of becomes a catch 22, too sore to move, but not moving makes me sorer.

i do hope you can get some help. i know what its like to be in a really bad spot, just lucky that i've had doctors and PTs to help me out of them. i'm pretty sure i wouldn't have been able to do it on my own, especially initially, before they taught me all their secrets.

Don't stop! Whatever you do - keep going for at least another month with the Humira. You are exactly where I was last year. I was sobbing my head off, about to start teaching after the summer, and trying to figure out how I could even arrive at school on time and stay the full day because I was so sick to my stomach.

If you can, try taking some natural TNF blockers until the Humira kicks in: Stinging nettle tea, ginger, turmeric (make curries)

My doc said herbs were no problem - I was merely adding to the Humira's TNF-blocking ability.

Big hug to you. It's awful waiting. Do remember that if it doesn't work, there's Enbrel, Remicade, etc. other options!!

Hello Pink
I too am sorry to hear how bad you are feeling.
I really think you should worry about helping your nausea before you worry about losing weight to help your back... one thing at a time, hon. Don't carry all your burdens around at the same time and crush yourself. Just try to get your awful sickness worked out, then once that is crossed off your list, tackle the next thing.
Be kind to yourself and like Jeffery said, just take baby steps.
Sending lots of good thoughts your way

Fresh or pickled ginger, strange though it might seem, does amazing things for most people with nausea regardless of the cause.

It's readily available in sushi places or any Oriental market.