Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club OKay, I guess I have to face it...

I joined this forum months ago, when I was first diagnosed with AS. I quickly stopped coming to this forum because I foolishly thought, "I am not like THOSE people... I am going to beat this. I will have it in remission in no time, and will not be suffering like them."

Well, of course, that is not the case. Now, I am looking for answers from people who have gone through this already.

For one, I am allergic to all meds (like Enbrel, Cymbalta, whatever...) so, those are not an option for me. My rheumy has me on some strong anti-inflammatories, which seem to help some, but as you all know, they can only do so much.

I am on a starch-free diet, and have been for about 6 months now.

I am constantly in a lot of pain, tired, the usual...

I work full-time, and it is killing me. But, I do not know what else to do? I cannot afford to not work, and insurance is provided through my work. But, I know my health is declining because I sit at a desk almost all day, and when I get out, I am driving on dirt roads, which hurt me so bad that I can barely get out of bed the next day.

So... how do you all do it???

Having a strong support system is a big part of how I get by, and this forum is an important part of that for me. Welcome back!

I'm confused when in one sentence you say you're allergic to all meds, and in the next, say that you're on strong antiinflammatories. By antiinflammatories do you mean NSAIDs? Did you have an allergic reaction to Enbrel and to Cymbalta? That certainly shouldn't rule out everything, or even everything in the same drug classes. I wouldn't think a reaction to Enbrel would predict a reaction to Humira or Remicade or Simponi, for instance, despite them all being anti-TNFs. I could be wrong, but I swear there have been folks here who are allergic to one and not the others. Sort of like how I'm allergic to two opioids, but not all of them, and one antibiotic but not the rest. Talk to your rheumatologist about what other treatment options exist if what you're doing isn't sufficient.

Also, I know it's hard with a full time desk job, fatigue and pain, but make time for exercise, in whatever form you can manage. When I'm taking a daily walk, I feel a world better than when I'm skipping my daily activity. Stretching is important too. Yoga and swimming are what my doctor recommends most, but the walking that I prefer helps all the same.

Sorry for the confusion - I am just as confused! My doctor said I am allergic to all sulfa (sulpha) based drugs, and all of the AS medicines that slow the aggression are sulfa based? Maybe I misunderstood? But, he said my only options are NSAIDs at this point. I have tried 6 or 7 different medications, and I honestly could not tell you what everything was. I am currently taking Indomethacin, because my doctor said it is safe for people with Aspirin allergies. It does help with inflammation, but does not seem to touch on the pain.

I did physical therapy for a while, but that made matters much worse. I have tried swimming, yoga, Pilates, Yamuna Ball Rolling, and even just walking. The only thing I can do is minimal walking. (About half a mile) Swimming does seem to be getting better. I can do one or two laps without too much pain. Really, the biggest thing is how I feel the next day. With too much activity (let's say 4 laps) I am stuck in bed for the day, and in severe pain for 3 days. I know everybody on here gets it - they are going through the same thing I am. I just want to know how do you do it? How do you get up each day? How do you make a living? And, I also wonder - did I misunderstand my doctor? I know I have been taken off all meds, but are there other options out there that are not sulfa or Aspirin based?

Oh, and my husband is a huge support through all of this, as well as my mother. But, I am not good at asking for help, and, I have a 23 month old daughter. She needs me, and I need her. So, I want to find a good balance to it all, and try not to rely on others so much.

welcome back NOT...as mary (iviary) said above, most of us get by here because everyone here totally understands everything you just said. and, because we hurt for you...as well as ourselves. i would have to comment that i have never met such a helping and selfLESS group of individuals as i have here.

now, for the pain, why are you not taking some sort of pain med? do you not believe in them? your quality of life is very degraded and almost impossible to live with. i would not make it through a day without my pain meds. like you, i cannot take the anti-tnfs, but for different reasons. however, you must do something to help.

instead of swimming, why don't you just float? i did a water therapy called WATSU. look it up and see if you have a practitioner in your area. it literally saved me. while i was in that water for an hour at each session, i did not hurt.

you are in the right place. come on over to the main forum too and jump in on topics of interest. i assume you are also on the alternative forum as well.

do you know, while i am posting and/or reading, i forget myself and my pain for awhile. there is a key to help with that statement. distraction helps...

we have to do something for ourselves. and, i mean to be kind to ourselves. make some time during the day for you only. it must be really physically tough having a 23 month old. i had twins, and know well what you are experiencing. as soon as hubby came home, i had the car running and i split, to the library (where there was no crying) or even to the parking lot to meditate.

we all need time to ourselves -- perhaps that is some of what you are missing. you never get an opportunity to be at peace.

welcome back, and i hope you find a path. that is the whole thing...we can spin in one place for ever -- but until we try to find a path, all we will do is keep spinning.

i was young with this disease, but not dxd until a couple of decades later. i just didn't know any better. i wish i had known at the time. i might have not felt so frustrated trying to do everything and kinda falling down. if i had known, i might have been better to myself, and admitted i could not do all family stuff like i was a normal person.

too much info here, NOT..just ramblings of someone who has been where you are.

prayers and peace, sequoia

Sequoia, thank you so much. I just want to hear that somebody who has been struggling with this for a long time is OKAY. I am so afraid that I won't be okay by the time I am even in my 40's. The doctors have me scared to death because they say my AS is being so aggressive, that unless I get it in remission, I likely will have complete fusion within 10 years. As it is now, I have fusion in my hips, and minimal fusion in my back. I also have scoliosis, so I am sure that plays into the back a bit.

As far as pain meds - they scare me. It has never been something that was pushed by any of my doctors. My family practitioner is the only one who said if I needed it, he would write me a Rx for something. I know I probably will have to resort to it, but do you have any quality of life, taking them every day? I am super sensitive to meds, and any time I have had a surgery, I usually take one pain pill and decide the pain is better than just being loopy, and not feeling safe to drive. Maybe there are less potent painkillers that do not make you feel this way. My fear also comes from seeing people who abuse painkillers, and I do not want to turn into that. I do not drink, smoke, or even eat junk food. Never have. I guess I am a bit of a "perfectionist" when it comes to what I put in my body. Silly, I know.

Maybe it is time to give it a try...

hey there are a full range of pain options...has your rheumy suggested a pain management clinic? that has worked so well for many here. i have never gone since this dx, but i have had preddy injections into my knees when i was a teen. now, i know from the dx, that it was the AS enthesitis. ask for a referral. the pain management doc will read over your entire file and decide on some options. you do not have to take them. some of them work, some of them don't. ablation, is a deadening of the nerves to certain parts of your anatomy. for some here it has been such a godsend.

i understand the pure body thing. i take acupuncture and the first thing my practitioner told me was to cut sugar. i did, and coupled with the acupuncture my inflammation faded about 1/2 way. i still experience significant pain in my right si joint and hip. but, well i try everything like the watsu -but with all my other medical i have not gone no starch...

no doc can predict the fusion. they are just trying to get you to understand the possibilities. i am so sorry you are so broken but welcome to the club. i just got thru 3 years cancer free with my second life cancer...50 years apart. i didn't take the chemo because i do not like poisons either. however, i would under different circumstances. this was metastasized breast cancer. if i had brain, i would throw the proverbial pharmacy at it.

listen, it all comes down to what we can deal with. personally, i think long term, chronic pain can totally change your personality and make you unhappy. it can also cause more problems physically as your body tenses up greatly with the pain. at least consider the muscle relaxants for night time. they can really help with pain spasms. i cannot take them due to a med condition, but i wish i could.

you will be fine. check in for the possibility of the pain management doc. and, don't be afraid to not take the options. i hate pain. i can deal with anything else but not that.

again, come on over to the main forum and give a summary of your story. you will get some good reactions here. ask questions such as what was the best pain relief method you found. you will get in contact with others who have solutions.

take care and let us know how you are doing. we have started the conversation, let it continue - it does help...

s.

Thanks. I will go to the main forum. Yes, I am going to a pain mgmt clinic, but never once have they mentioned any meds. I have had several injections, which didn't help really, a few epidurals, which helped for a short period of time, and now they want to do nerve ablation. However, they are hesitant because I am young, and "healthy." All my doctors say there is a great chance of my nerves restoring themselves ten-fold and I woukd be much worse off.

I also take pain medication daily. Rather than decreasing my quality of life, it greatly increases it. I would hardly be able to work, and certainly wouldn't be as productive without pain meds. I currently take tramadol nearly around the clock at a low dose with essentially no side effects. I'm also sensitive to meds, and post op pain killers like hydrocodone throw me for a loop. I'm allergic to some others and have had odd reactions coming off anesthesia. Tramadol and I get along great. It doesn't get rid of my pain at the dose I'm on, but it dulls it and let's me focus on the task at hand.

Re: your earlier question, there are several options that are neither sulfa drugs nor aspirin related. When you listed enbrel and cymbalta, is that because you've also had allergic reactions to them? They're not sulfa or aspirin related, so that's why I ask. Enbrel is an anti-tnf (A type of "biologic" drug), and the other biologic drugs should also be safe for your listed allergies. Cymbalta is a low dose antidepressant. I don't believe it's sulfa, but I'm not familiar with its generic name, so maybe I'm wrong.

The only things that come to mind that are definitely out for you from the usual AS treatment options would be some NSAIDs and Sulfasalazine.

Interesting. I mentioned those by name because my GP said I would be allergic to them. I know nothing about their makeup. I will have to talk to my rheumy about it more thoroughly. I see a lot of people with AS are taking tramadol. I guess I should consider it.