I am a 22 yr old female and have recently been diagnosed with Ankylosing Spondylitis. I would like to know how others cope with things once diagnosed with AS. I live in constant pain and quite often it is so bad it prevents me from doing things. I would like some suggestions on what can be done to relieve the pain. I have no insurance so going to the doctor is out of the quesion. Anything you would like to say is greatly appreciated. Thank you :)
Hi there! I am sorry to hear of your diagnosis. I know it's a difficult one.
I was diagnosed a few months ago, but had symptoms for years. However,
b/c I had such severe Osetoarthritis the DRs just thought my pain was coming from that. In the end another scanned showed the AS.
I am 35 yrs old. I am married with 3 dogs. I know it's hard to live and do things as you prob. used to. I had to stop working and that was truly difficult, b/c I loved my work. However, I started doing Ebay and now have a bookstore on Ebay. It's not much, but its' something!
I also cannot do much during the winter so I mainly just do WHAT I CAN, WHEN I CAN. Sometimes I will do certain chores on the commercial of a show.That way I can only do chores for a certain amount of time and then rest.
So that's one suggestion. I also use a cream called Theragesic (from CVS) or Walmart. That helps relieve the pain, as does my medication.
I know you said you have no insurance, but where do you live?? Maybe there is a resource to get health treatment. I used to be a case manager & my last job was the researcher to find everything a client needed after 9/11.
So, I may be able to help you research free clinics and free health care places depending on where you live. There are some place out there.
Or even something, low cost.
Please email me if you are interested and I'll do what I can.
Hi. I also have AS. I have 2 kids and they are difficult. Im on different meds also. But I still have lots of pain. I mainly try to rest as much as possible. I still have yet to find something that helps. If you would like support I would love to have people to talk to about AS.
The best thing that helped me was changing my diet. Try cut out sugars and processed food as much as you can. I also have found eating potatoes to give me flair ups.
I recommend going to a very basic diet for a week and then slowly introducing foods back into your diet and watching how your body responds to them. This is all I found to help me untill I was able to get on humira injections.
Hi I am age 35 female, I have been diagnosed with AS for just over 2 years.
I think I have always had symptoms of AS as it runs in my family. My energy level was terrible at first and finding a balance was hard but I'm slowly getting to grips etc. At first I had to take 6 months out to re-cooperate. Diet and an energy diary has helped...
My advice to anyone with AS is to write a diary- record down...
what you eat that day, what energy you have, when you need a rest, how long for, what you have done and when, time and date, everything... so then you can build up a pattern of your day to day life and start to see what you can do and when you need to pace yourself.
Although I eat mostly fresh healthy food, (frozen veg, baked beans, and tinned tuna being my instant foods) triggers from my diet are potatoes, tomatoes, and bread... all foods that I love... I have also cut down on gluten...
FOOD THAT HELPS ME- most of these are anti-oxidant, or anti-inflammatory...
Nettle tea, green tea, also 1 tea spoon of cider vinegar in a medium cup of fizzy water everyday (cuts through my pain), cherries, cherry juice, devils claw- natural ant-inflammatory tablets from health food shop, celery, beetroot, spelt bread- or other gluten free bread.
I hope this is a help, even though your post was in 2013 and is now 2015..
so happy new year and don't give up <3
I'll tell you how. I'm 42 and have had this since I was 22. First off you have to dig deep and get up and move around. I take the joint supplement packet at GNC which really helps and1200mg of advic coupled with two or 3 tylemol when it gets real uncomfortable or if I'm going for long walks or bike rids etc. I also have psoriaroc athrittis. I do yoga 5 days a weeks and lay on the log to keep my spine straight. That the foam thingi. I have never taken any pain meds or meds at all. I also have 4 bulging disks in my back and 2 in my neck. So the moral to this story is activity and whatever you do, don't feel sorry for yourself. I'm in pain everyday but I keep the pain to a minimum so u don't notice it most of the time because I'm willing to do what others don't. Isn't that always the recipe for success.
I thought I responded although I do not see my post. I was diagnosed with AS when was in my 20;s. The best advice I can give you is try aleiive, it is for inflammation. I was in such pain i could hardly get around, I tried naprosine(which is the main ingredient to aleivei) although it cause me heartburn severe. so I could not take it. stretching and yoga helps. I also have a person that does cranial therapy on me which helps a lot-it is sort of like acupuncture w/o needles she uses her hands and can fell the pain to lesson. it is hard to explain. there is DVD;S called the oh gosh i forget the name i think it is the Anail Bethod movement or something like that and it works very well... if you look up DVS'S maybe search cranial therapy. I see your post was quite awhile ago. AS also runs in my family.
My brother has it too, he was on a cabe for awhile, i am in my 50;s and with age it gets better although I still have inflammation and it does get to my knees where i can barely walk at times. It was a lot worse in my 20's and 30's. it attacks so many different joints, I had chronditis once and it hurt to laugh and move a;though my kids were young then and I had to do what was needed. plus the hip which still continues(not as bad) back then to really was hard to get around w/o holding on to something to get around, I feel for you all with AS on this site there is information about it and that may help. best wishes to you and all who have this disease... like i said it does get better with age. for me and my brother. My niece also has it. They out her on morphine although i thought that was CRAZY-she is off of that she has 2 young kids although I think her toleration for strong meds is strong since she has been on many... I wish I would have learned about food from the other posts, it makes so much sense, best wishes...
Staying active is CRITICAL. I was diagnosed with AS almost 18 years ago and it has progressed exponentially in the last 5 years.
OTC NSAIDs (naproxen) is probably best first choice.
Research core stretches. Through all the medicines and all the doctors, stretching has always been a help. Don't overdo it. It may be difficult to find, but there is a fine line between being sore for a couple hours and being laid-up the next day. Daily exercise is your best bet.
The sooner you are able to get access to a rheumatologist, the better your long term prognosis will be. New biologics have shown great promise in mitigating long term effects of AS, but currently cost thousands of $ per treatment (so not an option without insurance.)
I have had some luck with the "no starch diet" as long as I stayed true to it; but it is very difficult to find foods with zero starch. There is a theory that molecular mimicry plays a large role in the level of inflammation experienced. The no starch diet, in essence, starves the bacteria (which feeds on starches) that your body is reacting to which causes reduced inflammation. The bacteria (in AS it is klebsiella) and the HLA-b27 gene are closely related and when the body produces antibodies to fight the bacteria, they end up attacking connective tissue which is where the HLA-b27 is prevalent causing inflammation. It can take several days of fasting to remove residual starches, but the effects will be profound. Introduce foods one at a time with a day or two between to gauge your body's response.
Turmeric is known in alternative medicine to reduce inflammation. Also capsaicin has anti inflammatory properties similar to NSAIDs.
Without access to insurance (and therefore western medicine) look to eastern medicine and homeopathic treatments. A word of caution, there are less regulations for these alternatives so be sure to thoroughly research sources for treatment.
I wish you the best luck in finding relief from this painful condition! It will not be an easy journey, but we are not alone. You must become your own health care advocate. Remember, no two people experience AS the same way, so trust your body to tell you what works.
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