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.

Weird. Yeah, definitely ask your rheumatologist why he predicts an allergy to those meds. Unless there's another allergy or medical condition at work here that hasn't come up yet in your posts, I really don't know what he's talking about. There are certainly some medical conditions that preclude patients from taking anti-TNFs. MS, other nerve disorders, epilepsy and cancer are some that generally exclude their use. I see that congestive heart failure, diabetes, and asthma are also things you should notify your doctor about before taking anti-TNFs, though I'm not sure of the specific concerns for those conditions. I have mild asthma and it hasn't been a problem where my treatments are concerned. Are you allergic to latex by any chance? There's latex used in most of the delivery methods for the anti-TNFs. Off the top of my head, I don't think Humira or Simponi have latex-free options. Enbrel has one latex-free option (the prefilled syringe and autoinjector have latex, but there's an option you mix yourself that doesn't), and I'm sure the ones delivered via IV like Remicade are latex free as well.

Is there any chance that he said Celebrex and not Cymbalta? I often mix up those two brand names myself with their heavy TV advertising for use in some of the same conditions and their similar sounding names. Celebrex is a problem both for aspirin and sulfa allergies. It's an NSAID, as opposed to Cymbalta which is a serotonin-norepinephrine reuptake inhibitor, aka an antidepressant.

I don't think scoliosis can affect fusion, but I might be wrong.

Doctors are often misinformed, sadly. There's no real way to predict the disease course in any individual. But I did read a few papers supporting the notion that the first ten years of disease are usually representative of the outcome.

For instance: no hip involvement within the first decade seems to predict that the hips will not be a big problem later on. Most major problems seem to start within the first decade.

I don't see why your doctors told you that you'd fuse in ten years. Some people start to fuse early and it stops and never starts again. The truth is there is no one truth about this disease and doctors have a hard time admitting that they can just treat symptoms and have no idea what the future will hold.

Don't pay TOO much attention to the predictions of your docs.

Even if you get it into remission there's no way to know if fusion will continue. Remission is a clinical designation - reflecting symptoms, quality of life, etc. None of the medications available to us have been shown to stop fusion, if it is happening. It is possible that NSAIDs may slow the rate of fusion in people who already have some fusion, but there isn't enough data yet.

As has been said - nobody can predict with a high degree of accuracy, which of us will have a lot of spinal fusion. Since we can't control it, the best thing to do is to avoid fretting and focus on interventions that reduce pain and stiffness and improve range of motion and overall quality of life - aka remission

Thanks, everybody! That makes me feel better. I have been so freaked out by the thought of total fusion!

I will continue with the NSAIDs and hope for the best. I am increasing my activity, which is also increasing my pain by quite a bit. I can only think the extra blood flow and exercise is good for me. I have an appointment next week with my doctor, to hopefully get a low-dose pain medication.

Another question - I think I am anemic. I have the obvious fatigue, but, the reason I feel I am anemic is the fact that a butterfly can land on my arm and I get a massive bruise. (Okay, not THAT bad, but pretty close!) Do any of you have issues with this? Do you take iron supplements?

Anemia can be caused by inflammation. When my AS was not under control, I had a super-high CRP and inflammatory anemia. I felt a lot more tired than today. My days were chores back then.

NSAIDs can cause easy bruising and increased bleeding. Don't assume anemia and self-treat with iron supplements without talking to your doctor. If it's just the NSAID then you're stuck with it. If it's iron-deficiency anemia then supplements may help (I'm not anemic, but I take one to keep my hematocrit high enough to donate platelets every 2-4 weeks). If it's anemia of chronic disease as seymour referenced, iron supplements will NOT help. Managing the disease WILL help.

Bruising could be a sign of vitamin K deficiency. Everybody, especially women who take supplemental calcium, should be taking vitamin K2 anyway (in the MK7 form) for its bone and cardiovascular benefits.

seekonk, I had not heard a recommendation like that (about vitamin K) - can you share some references?

The wikipedia page on vitamin K2 is a good starting point.

I didn't see anything there supporting your statement that


According to the NIH, the only uses of vitamin K with sufficient evidence are: vitamin K deficiency, prevention of certain bleeding/clotting problems, and reversing the effects of warfarin over-treatment. It also says "[s]o far, research results on the effects of vitamin K on bone strength and fracture risk in people with osteoporosis don’t agree."

That said, it doesn't appear that a vitamin K supplement would be harmful for most people.

Am I missing something?

Thank you everybody for the information. I see my doctor this afternoon regarding the bruising as well as a painkiller of sorts, to just use on those bad days. The past two days I actually have been doing fairly well. Only back pain. I think a lot of that is due to it being the weekend, and not sitting at a desk all day. Also, I have been cutting sugar out of my diet. Not sure if that helps or not, but I just decided to give it a try. Anybody else try that??

yep, i did that last fall in connection with acupuncture. my acupuncturist told me to cut sugar completely out of my diet. since i am retired, i was able to do that easily, for about three months as a test. whether it was the acupuncture (which has worked for me in the past) or the diet, 1500 calories - i lost a lot of weight, more than 20 lbs, and most of my inflammation.

i should have separated those things out...just gone on the no sugar first to see if that is what lost the weight. or just the diet alone, or just the acupuncture alone. so, i don't really know. i suspect the acupuncture and the sugar more than the diet which equated to a cut in quantity, which is always the easiest way for me to lose weight in the past.

BTW, both my pain and inflammation reduced greatly with the acupuncture and weight loss. i believe it to be a combo of those factors, tho i think just plain sugar is no good for anybody. just my opinion.

we have a natural forum, the alternative forum here, NOT, just read around.

s.

my doctor told me it is the medication that is causing such severe bruising, and to just watch it. I definitely think there is a correlation to how I feel, and the amount of sugar I consume. It is hard, though, because I make fruit smoothies almost every morning, and we all know fruit is loaded with natural sugars. I have never been one to eat a lot of sweets. Just the occasional dark chocolate square.

I also was prescribed tramadol. My doc says he thinks I just need to have it on hand for those bad days. I will say, it does help, A LOT. It is nice to have it on hand, just in case. My plan is to not take it daily, but only when I need to be super active, or long days at work when I cannot walk around.

On another note, next week I am getting a treadmill workstation, per my doctor's suggestion. I am really excited!

getting a workstation treadmill is incredible! i wish employers had understood these situations when i was still working. i have mentioned my other medical problems, but one of them is MS and another is myasthenia gravis. both cause me to either stand or sit down often, in sometimes quick succession. the AS keeps me upright too, so i am not sitting on painful si joints.

you will really enjoy cutting the sugar, if only for a little while just to test. i really say i felt better from a dietary standpoint. i also think it worked with the acupuncture to help get rid of the inflammation. i know everyone doesn't believe in the other methods i have described here, but what works for us, is what we should do.

chart your own path with the AS. and be sure to take the tramadol. i take a stand alone opioid, because i don't like aceteminophen. and i am very conscious of not taking more than i need. i have been having the same prescription for over 2 years. still works for me.

good luck, and just stay with the forum for awhile. it is really important to get multiple viewpoints. then everyone can see part of themselves, and a possible solution in others.

s.

Yeah, the bruising and excess bleeding with NSAIDs can be irritating or even upsetting! For me anyway, it has never risen to "problem" levels, hopefully the same will be true for you.

Treadmill workstation, cool. I have read a lot about them lately. You are lucky to have an employer who will pay for it! I have a good job, good employer but had to jump thru a lot of hoops just to get a floor pad to stand on for when I want to change positions (I rigged up a "standing workstation" putting my laptop on a stack paper reams on a filing cabinet )

I'm glad you have the tramadol in the arsenal. Your approach to it is sound.

Don't beat yourself up about the diet - sounds like you are doing great there - it's the added sugars in the Western diet that are the huge problem, not the natural ones in fruits (unless you have a specific problem like diabetes of course.) Also dark chocolate has very little sugar, and a lot of antioxidants - consider it a health food!!! Seriously ...

Treadmill desks are a great idea. I make myself watch my trash TV from the treadmill. :P I really want an adjustable desk in my home office that I can use standing or sitting depending on my fluctuating needs. If I used a laptop that'd make it easier, but the type of work I do demands a lot more screen real estate and hardware than is realistic in a laptop. Thankfully most days in my office job, I can just get up to photograph product or do standing production table work for a while when I need a break from sitting. I'm bad about being similarly nice to myself when I'm working from home!

No, I do not have an employer who paid for my treadmill workstation... I just have an employer who allowed me to get one. I paid for it. But, I am very fortunate to have the employer I do, who is very flexible with me.

I have not had sugar for about a week now, and do feel quite a bit better. I am going to keep this up and see how it goes.

I would agree with Iviary about the TNF blockers- they are not sulfa based and I am not sure why your Dr. thinks you would be allergic to them unless he has some other reason to think so. If he continues to resist them, I would get another opinion. My son was on Enbrel and now Humira and they have been miracle drugs for him.

I talked to my doctor a little more - I would not be allergic to the TNF Blockers, but he said with how sensitive my body is to everything, that is an absolute last resort, because he does not think I would respond very well.

Some good news...... I decided to cut sugar out, start taking probiotics, and increase my garlic, oregano, and coconut oil and have GREAT results. After just one day my pain decreased dramatically. It has been 4 days now, and I have been doing heavy-duty yard work (rock walls, 4 tons of gravel, building a greenhouse, etc...) Before doing the natural therapy, I could barely pull a single weed in the yard, let alone lift and build things!! This may be a fluke, but I feel like I am putting my AS into remission after 3 painfully grueling years of daily agonizing pain. FINGERS CROSSED. My pain is down to a 3 on a scale of 1-10, and it almost always was a 7+