Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Needing support

Hello Shari,

Welcome aboard. Hope you enjoy it here and that your husband can find some compassion.

Come here to vent whenever needed.

Take care,

Tim

I hope your hubby can gradually come to terms with it. One thing I think that spouses get hit by is really hating that you are in pain when they can't do anything about it. I suspect that causes some of them anyway to blank out on it. The suggestion of taking him with you to appointments is good - that way he can see how bad it is, but also see you talking quite matter-of-factly about it with your doc. I do think that being honest yourself - especially when it comes to saying no, I can't do that right now, is so important too. I also like (naj?) idea of sharing what you read here as a way of showing him that other folk are going through the same stuff as you. There isn't going to be a simple remedy though, and I think it is going to take time for him to accept, just as it took all of us.

seems you are turning into me Jan.....rambling I mean...!!!!

Hi Shari

Welcome to KickAS. I hope you find this site and people as helpful and kind as I do. I am waiting for a book to give to my wife, so she better understands what I go through. Not looking for sympathy just understanding. Come here anytime....we understand.

ahahaha, Alan! Maybe I should....write a book!

You guys are such a blessing! I really needed laughs, advice and to hear your stories. I feel as if you guys are my family. I love that!

I am going to ask my husband to look at this site and to come with me to my next Rheumy appointment in two months.I think he will have a better understanding once he sees I am not alone. I don't want him to baby me or pity me. All I want is for him to know, my AS is for real and that I am fighting a very bad battle. I do the best I can every day. My daughter understands and told me the other day "Mom, you have a different kind of sick". I reassured her I am not dying and that I need to take medications, rest sometimes and eat well. She knows I walk different and my posture is slightly hunched unless I try really hard to keep upright. As an OT, I dont practice what I taught.

I feel bad too my little girl doesn't have a sibling and a sick Mom. I just couldnt take care of two kids. And I worry she will get this crap too. I read probiotics may help in prevention so I may give her some weekly. It can't hurt.

I saw my Rheumy today, he told me to increase the Tramadol. He said no to the low dose Natroxene (sp?) He said there is not enough scientific evidence . If it helps one person, it could help me. I am in such a flare right now. This sucks!! I still got down on my knees and played koo koo birds and kissy monster with my daughter tonight. She was giggling ever since I picked her up from school. I am nervous, however, about the teenage years.

Hoping, with the help of you guys, I will be in a better place soon - mentally and physically. Still fighting a sinus infection with the AS flare up, lots of brain fog and fatigue.

Will post more tomorrow. Off to bed

Thanks again for being there everyone! Looking forward to giving back to you guys soon.

Shari

well, it is up to you, if like me, you decide not to take "no" for an answer. my GP gave me this whole lecture on why he wouldn't prescribe it, but i figured that was one doctors opinion.

the rheumy i see now is cautious when there is good evidence to be cautious and open minded when that makes logical sense. he's much more of the mindset that if its something with a history of being safe, then what's the harm in trying it. if it doesn't work, we're no worse off than if we had never tried it. and if it works, we just learned something!

so, if you really want to try it, there are a few things you can do:

1. this is what people here suggested:
find your local compounding pharmacy
ask which doctors in town prescribe LDN
make an appointment with that doctor

i was planning to do that. had an appoointment with a local naturpath GP doctor. but then my rheumy wrote the script so i canceled the appointment (though now i do see her for other reasons).

2. how to get a doctor to consider it:
doctors like scientific papers based on clinical studies and lab work.
if a doctor is open minded to learning from us as well as us learning from him,
then this tactic works.
so i found some papers through pubmed that showed
a) LDNs safety
b) LDNs promise (especially in related diseases - thus went with crohn's for one)

http://www.ncbi.nlm.nih.gov/pubmed/17222320
http://www.ncbi.nlm.nih.gov/pubmed/21380937
http://www.ncbi.nlm.nih.gov/pubmed/21910569

and this one for general inflammation:
http://www.ncbi.nlm.nih.gov/pubmed/19453963
though a study with fibro patients, the abstract states that those with inflammation had better effects.

and a new journal article on how LDN may be working:
http://www.eurekalert.org/pub_releases/2011-09/sfeb-ldn090211.php
http://www.ncbi.nlm.nih.gov/pubmed/21807817

though it focusses more on cancer, as you can see in the new article for the journal article, the same mechanism can be applied to autoimmune / autoinflammatory.

while doctors are never impressed with information from forums, what patients friends, etc have experienced, most seem happy to get 3 or 4 on topic journal articles or even the abstracts for such.

as for safety, its been more websites than journal articles that i've found, but that seemed to suffice when combined with the clinical trial results.

then, once i have a history of being on a drug with good effects and lack of side effects, then its usually much easier to get any future doctor to keep prescribing that which was difficult to get initially.

not that you have to go this route, just that you can if you want to. if all of my doctors give me the same warning, i listen. but if they are in disagreement with one another, then its up to me to decide. LDN fit that perfectly. my GPs main argument was because he had never heard of it, didn't matter if i brought him the journal articles from the clinical studies. while the rheumy who first prescribed it, while he had never heard of it, my arguments were convincing. and after i reported how much it was helping me, he started prescribing it to his other patients. this is how i think medicine should be: we're all in this together, all learning from one another. while my doctors generally have the wealth of information, my best doctors are those who are constantly, actively searching out the newest information, be it from conferences, their own reading, or a patient bringing them good scientifically based information.

Maybe it's because we are such strong determined people and that we do our best to carry on like nothing is wrong. Putting on that brave face when you're in so much pain. Trying to walk without a limp when people are watching. That's why l think the other people don't understand, they can't see past our strength, to them it appears we are okay or it's not that big of a deal. If it's not visually obvious like a cast on the arm or an incision from a recent surgery they will not get it. My personal experience on this situation is when l had a terrible flare up in my right shoulder. I couldn't us my right arm at all for 18mos.,not good when you're right handed!. I was once again accommodated at work for this. One of my co-workers was in a car accident and hurt her right shoulder she was work accommodated also. She had a sling on her arm I just kept my upper arm close to my body. She had all sorts of help and got a get well card which I signed along with everyone else. Not that I was looking for a get well card that's not what I'm getting at. What I want to point out is it all was comprehendable to people, she was in a car accident and was wearing a sling, people understand because they can see it. We both went to physio she got better I didn't, people don't get that. So l worked harder than anyone at work to make up for me being work accommodated. In conclusion they didn't care because they didn't get it. I look healthy and my spirits are up 99% of the time, despite being in chronic pain, that throws people off I guess. Ending on a good note Thank God for KA and all the shoulders to lean on.

above post... hit the nail, on the head.

I read the post back to my daughter and it brought tears to my eyes. Had a little moment but I'm strong again.