Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I need help

Hey everyone.

The depression has lifted significantly and I have been feeling better in that regard. I have been out and been enjoying life much more.

The truth though is that I'm still really sad and worried at times. I've been through quite a fair amount of pain over 2-3 years so I'm fearful that I'm on the inevitable road to fusion and disability. This almost makes me sick to think about as I've only just finished high school. I try not to let it but this thing has dictated my life for a while. I haven't been able to do things I want (like an overseas exchange) because I don't know how I would cope away from home with this.

I'm in a real dilemma because I can't decide weather to take the traditional approach with this condition or the alternative no starch route.

I've seen what medication can do to you. I have heard of way too many cases of people developing other significant issues as a result of long term medication use. I've seen a friend develop MS because of biologics. I've heard of people developing cancer as well. It just seems too heavy and risky.

On the other hand, I had such a terrible experience when I went on a strict diet. I lost weight, lost confidence, found myself trying to convince endless 'professionals' that the diet truly worked to no avail. I will look back at that time 2 years back as one of the hardest of my life. I know that the diet can work, it's just so hard. It's hard socially, hard to get it right, it's limited etc etc.

So here I am in a place that I have been for over a year, trying to avoid as much starch as possible but still struggling with a lot of pain. Why couldn't I have got this later in life?

I know I'm complaining a lot and to be honest I HATE complaining. I know that there are so many people in this world who have been through pain that would make my experience look pathetic, but I'm still struggling and worried and all of that. It's probably because of my age I lack maturity or something I dunno. I guess the reason why I come here a lot is because I feel alone with this. I don't know anyone my age with arthritis. I NEVER say anything about my AS to ANYONE so the only place I have to let it out is here. I think that's my pride. I just don't want to admit I have anything wrong with me so I find myself putting on a smile and concealing everything.

So I'm sorry again for this. I guess in truth I'm just lost and feel like I'm doing this alone without the support of family or anyone really. I've got many years ahead of me (hopefully) so I guess that is why I'm so concerned.

Truly appreciate any advice or guidance.

Thanks a lot,
Seb

I would seriously look into medication to help with the pain. I was like you with the diet and successful but only lasted 4 months because of energy and depression issues. It might be difficult to get on anything useful unless doctors are convinced you have the disease though. I haven't had that luck yet.

I think you probably really need to sit down and have a serious talk with your rheumatologist about all this. I can understand you being reluctant to take meds having seen a couple of bad examples with your friends, but I think you will find that for most people biologics are miracles that deal with all the things you are having the most problem with, and the incidence of those serious side effects is very small.

You are also in a health system that uses "evidence based" decisions on what drugs will be available for prescription, (and there are many drugs that NZ has declined). If the NZ health dept has decided to offer certain biologics, then you can be sure the risks and benefits have definitely been very carefully investigated, especially in the case of very expensive drugs like these.

I suspect that if you don't do something to really "treat" your AS, then you will be much more likely to achieve your worst case predictions of further increases in pain and disability. If you do start treating, then you could just as easily end up having a really good life with minimal disability and little progression.

Have a good talk with your rheumatologist - let him know ALL of your concerns, and then ask for his recommendation again. And then give serious consideration to going with his treatment recommendations at least for a trial period.

Hi Seb, You have all the caring and support from all of us ASers on this site and we all care and understand what you're going through. I think l can speak for most of us and say "Been their, done that". You need to make a decision so you can start to heal. Don't look at the meds as a life long sentence, you have choices one being to go on meds until you get a handle on your pain. That alone should make a huge difference on your outlook about everything, pain is cruel. Once pain is under control start the NSD faithfully, buy some books on the paleo diet just to get a feel for what is good practice when it comes to eating. NSD and paleo diets are great ways of eating and everyone not only people with autoimmune diseases should be eating this way. Once you have eaten NSD for a few months start a plan with your doctor on weaning off your drugs while remaining on the NSD. See what happens. Don't give up and be persistant. Remember you have the end say in your treatments.The doctor is part of YOUR team. GO FOR IT! GOOD LUCK!

Hi Seb,

I think it is smart of you to come here and vent or complain and air your fears, Seb. I hope you will continue to do just that until you begin to feel less alone with your fears, as well as more confident that you can have an amazing life despite this rotten AS.

I've had it since 18, for just over 30 yrs... I have fusion but no obvious deformity that others would notice... my life is good. I have lived with the rotten pain and had lots of fun despite it. Like others have said, finding a treatment that works for you can be a huge help in coping with it, and in ensuring you have the best possible future! I think the challenge is to find a balance between fighting the battle with AS each day, while allowing yourself to ignore it at the same time, so that you can enjoy life along the way.

It is a challenge to find a treatment that works for you and suits you. Perhaps it is not an all or nothing answer? Maybe for you it is a combination of low starch and trialling some medication(s) that you and your doc feel have the best safety profile, until you find one that suits. Daily stretching exercises might be a good one to consider in the mix... but the goal is to find something that helps to some useful degree and is an approach that you are comfortable with. Personally, I have always been more concerned with the long term negative effects of the disease than with the meds, due to the severity of my pain and it's impact on my ability to work, play and enjoy stuff. For you, that 'risk versus benefit' perspective may be quite different. So, we try one approach and if it doesn't work, try a different combo.

I'm rambling a bit but will say one more thing. When I was your age, I really wanted to continue my studies in Italy... but since I wasn't even able to carry my own suitcase, I figured that wasn't a realistic plan - so I changed my plan. I did not give up my dreams, just changed the path I took to get there. Where there is a will, there is a way.

Don't apologize for posting - it helps everyone to re-think and to give each other a mental boost in the process!

18........and had it for 30 years.........errrr 48!!!!! no no no i think you have your starting age wrong.............I think it began when you were 8...!.

Oy. Stop it you - no aging me prematurely! I am young!

And stop adding too... no math! Down with math!

Seb,

Cemc is right, I feel. Yes, there is a tiny chance you can get cancer or MS (that one is new, never heard that before) as an extreme side effect from the biologics. However, that chance is SO remote, so extremely rare that I think it has to be only a minor factor when deciding whether or not to take the drug. That might sound like a cavalier attitude to some, and maybe it is, but I guess I fall firmly in the school that I'm definitely going to fight the disease I already have (and that could drastically impact my life in a very negative way) and worry about fighting the other diseases if and when I develop one of them.

Let's face it, cancer and MS are scary diseases--just saying their names and thinking about how devastating it would be to contract one of them is very scary--but the chances of developing one of them from the biologics is extremely remote. Yes, it CAN happen. But one thing is certain: because you already DO have AS, if you don't do something to treat it, the disease will almost certainly get worse as the years pass and, unfortunately, there is a good chance some of your worst fears about pain and disability will come true. If I were your age right now (I am 47), I would absolutely choose the NSD as my first choice in treating the disease, which is what you did. According to your own report, that first try at using the NSD just did not work well for you, which is not a terribly unusual reaction, as it's not an easy program to follow.

Since you have tried the NSD once, but, I assume, have not yet tried any of the biologics, you find yourself at a very important crossroad in treating your AS. In front of you lie three options, not two: you can try the NSD again, knowing that many people have had great success with the diet and that while, yes, it is difficult, if you can reach the point where the diet becomes second nature, there's a good chance you will find yourself in a good place when it comes to AS.

Second, you can decide to try the biologics for the first time. Again, many people--myself included--have had great success with the different drugs available to us. Anyone who asks me, I absolutely advocate using Enbrel and Remicade, as they extended my work career by at least 5 years (and would have been much longer if they had been created earlier) and changed my life in a very, very positive way. However, I always add a "but . . . " to my endorsement of the biologics because I recognize that they are powerful drugs that can have strong, negative side effects, meaning even though they have worked for me and I recommend them, every person has to do their own homework and make their own decision about whether or not to take them. Because you are so young and you still have a chance to really stop the disease in its tracks, to me that would increase the odds that I would decide to take the drugs if I were in your shoes.

The third choice is to explore other, even more alternative treatments that are, as of this time, only used by a small number of people. These treatements can include herbal remedies, acupuncture, radon treatments, and many others. Perhaps the most promising lesser-used treatment is the LDN (low-dose naproxen) regimen that quite a few KA members are starting to use with good results. I don't know enough about any of these alternative treatments to even comment on them, but you can find plenty of info about them here at KA.

Finally, there is the fourth option, which is to do nothing (or next to nothing) when it comes to treating your AS. To me, this is the only option you absolutely CANNOT choose, and yet I fear you are right on the brink of inadvertently choosing this route because your fears regarding the negative sides of both the NSD and the biologics is leaving you almost paralyzed and unable to make a choice. Whatever you do, Seb, you just can't let this happen. I know it's easy to become depressed about the future, that it's easy to feel a real sense of hopelessness about the future because AS can cause such very real and very serious problems. However, if you let that depression and worries about the side effects push you into a place where you're unable to choose a treatment option, it's almost a certainty that your worries will become a self-fulfilling prophecy. In other words, you're so worried that the years ahead are going to be terrible due to AS that you're on the verge of doing nothing to stop the disease now, thus absolutely guaranteeing that the years ahead WILL be bad. Does that make sense?

If I was your age now and facing AS, I would try my hardest to look at things this way: Yes, it is a bad disease, but right now, there are more potentially excellent treatment options available than at any point in recent memory. If I look back to what was available to me when I was your age, I see this: No internet, meaning no communities such as KA where information is readily available (trust me when I say that it was next to impossible to learn ANYTHING about this dang disease back then); no biologics, meaning the only real med that docs used were the NSAIDS, which we now know are generally awful drugs that should only be used as an absolute last resort; and no way to really learn about the NSD and gain from the experiences of others who had used it already (thanks in large part to the whole "no internet" thing). I hope that when you look at things that way and realize how bad things were just a very short time ago, it will give you some hope and help you overcome your depression regarding the disease because honestly, Seb, even though things are far from great right now, you absolutely do have far more potentially positive options to choose from than AS patients had even 10 years ago. And, to be even more optimistic, I know there are even more biologic and genetics-based drugs and treatments in the pipeline that could REALLY revolutionize the way AS is treated.

I didn't really mean for this to end up sounding as much like a "pep talk" as it does. The main message I wanted to convey and which I will repeat right here is a simple one: Don't let your fears paralyze you to the point you end up doing what amounts to nothing to treat your AS. Examine the treatment options available to you, choose one, and approach it with all the optimism you can muster. Make sure you fully commit to your choice both physically and emotionally, as doing so will increase your chances of success. Once you've made your choice, give it a real chance to succeed. That is, if you decide to try the NSD again, don't get fed up and quit after just two weeks because that means you would have wasted your time even trying. Same with the biologics; if you choose that route, study the literature and talk with your doctor to determine how long you need to stay on the drug to get an accurate picture of whether or not it will work for you. Anything less is, again, a waste of your time (the one exception to that rule would be if you had to stop taking the drug at ANY point due to negative side effects--of course you need to listen to your body and stop taking the drugs if you do have an adverse reaction to them).

If you can do this, if you can make a choice and stick with it long enough to make an accurate assessment as to whether or not a given treatment option will work for you, then I think you'll see the depression start to lift no matter what happens. Ideally you'll see very positive results from your choice and you'll be less depressed because you are feeling better than you've felt in years. That is my dream for everyone here at KA. But, even if the path you choose ends up not working for you, I think your depression could also be decreased anyhow because you took the bull by the horns and chose to be pro-active instead of quitting and doing nothing. Yes, there would be a let down because the option you chose didn't work well, but you could still be proud of yourself for overcoming your ennui and depression so that you could actually FIGHT against your disease.

Hope this helps (and makes sense!). Good luck to you Seb, and hang in there, as things can definitely get better.

Brad

Seb- There is excellent advice here. Read through and think on it. For my ownself, in yr shoes, I'd look at the drugs scene - get a handle on the disease then, later, can go the NSD route? Or LDN/NSD route. When you are more independent to make your own path? That is away from school, no one peering over yr shoulder and, with more confidence.

And, heigh, complain away. Helps to discuss stuff, chew the cud as they say. OK?

Take care.

Seb, I feel partly blessed that no one diagnosed me when I was young.
For the past 20 years, I've just handled pain as it came, and lived my life like I always lived it.
That is a double edged sword, however.

NOT KNOWING: I was able to live my life like any other young person. Eating what I wanted, drinking, etc.
BUT the trade off I didn't know I was making, led me to the present.

KNOWING: I just cannot imagine what it must be like to be young and faced with all of this.
It would have scared and depressed me also, especially since I had no handle on my anxiety then.
What a tough road for a young person to have to face.

I'm unsure what to tell you, since I did not face these questions at your age.
But I did think about what I would tell me, if I could peek into the past and give myself a heads up.

I would tell myself to go get diagnosed, to find a doctor that treated me like a partner in the management of my AS. Someone that discussed and explained in full, ALL options available to me, and encouraged me toward more natural, less invasive treatments. I would tell me that if I can learn to be preventative, maybe I won't be in so much pain later. To be proactive, as naturally as possible. To change my major, and take nutrition and culinary classes. To learn to cook starch free, and learn to make it delicious and easy for anyone to follow. To eat whole, raw foods as often as possible. To find farmers markets where I can get locally grown produce in season, and grass fed free range proteins. To drink a lot of water, especially if I take something for pain. To become a masseuse, start yoga and martial arts classes, and to learn to meditate. And most of all, to exhaustively research any path I may take, weigh the pros and cons, and make conscious, informed choices.

Though the changes would have initially been difficult, I would have met and been influenced by a whole other set of people.
New friends, new choices, new hobbies. All for the better, I think.

If I could really tell me these things, I might be a pain free culinary genius right now, making all of your lives SO much better!