I like to peruse Akylosing.org , well I actually have the feed on my webpage so I really can’t miss the questions, and some questions make me really think about this disease that I have. I am very grateful for not having all the symptoms that some have, having all the pain that some have, having all the hurt that some have. So after looking at the website I have come up with the Top 10 questions that got a lot of responses from people and then answered them here.
4. Foot pain
5. Heel pain
7. Teeth pain
9. Pain medication
10.Family history of AS
Question 1- Exercise. A lot of people with AS exercise, some have substantial pain and some do not. Some can exercise while others cannot. I… do not like to exercise. I sit in a chair, getting up and walking to get a patient every 30 minutes, 5 days a week 8-10 hrs a day. When I get off I drive 40 minutes home and am too tired to go and exercise. On the weekends I mow the grass, with a riding lawn mower, pull weeds, swim and on occasion water ski. In the winter the same without the swim/water part oh and the mowing and pulling part. I am going to try water aerobics starting this week, I hope. I know they say to exercises is good but how can you exercises when you have to take pain killers to do it. I think that there are people who have to exercise because they are exercise junkies. Me… swimming is more my thing.
Question 2- Injections. There are a lot of people who swear by drugs that treat autoimmune diseases by interfering with tumor necrosis factor (TNF; a soluble inflammatory cytokine) by acting as a TNF inhibitor such as Enbrel, Humira, Remicade. Some people haven’t had a good experience using these drugs either. I personally haven’t seen the evidence that supports these drugs use and the risks of taking them. I worked with a woman who tried all 3 of these and none of them gave her any relief, she did have RA and stated that without them she would have never gotten to work let alone out of bed. This woman looked like hell from all the years of having chronic pain and I would imagine some of the side effects these drugs left her with. I think I will wait until something proven comes along.
Question 3- Pain. Everyone feels pain differently and no two pains are alike… Pain is subjective and if someone tells you its NOT, slap them with the hand that’s not hurting! I have wrote enough on pain so I won’t go into it on here.
Question 4- Foot Pain. Its amazing that such a small part of your body can cause so much pain… I remember last winter when I had a severe flare-up how bad the bottom of my feet hurt. I never thought about it being part of my AS until I read a lot of answers to a particular question about this persons feet hurting. “The bone is just pushing through my skin” was a description I found interesting as that is how my feet felt for about a week of two. For some people the pain is much worse and can be anywhere from the ankle to the toes, top or bottom.
Question 5- Heel Pain… see question 4
Question 6- Diet. Some believe, some don’t, that diet could be the answer. Some people just want to believe that medication will solve their problems when others, like me believe what we put into our bodies causes more damage than good. People start to think about their diet when the medication isn’t working and they are left without anymore options. Then they wish they had tried it sooner. Some people say they tried the diet changes and found that it didn’t help, but I found most of them did not give it a chance to work because it is to strict and they aren’t disciplined enough to stay on it even if it means feeling better. Then there are those who tried the diets, got some relief and then the pain returned and then they go back on the drugs. Me, I tried food tolerance testing and so far it is working but it is a work in progress.
Question 7- Teeth pain. Well apparently dental problems go hand-in-hand with AS as I read, because a lot of people with AS have sensitive teeth and gums. Probably a good thing to tell your dentist, so he can look it up and become more aware of your situation. Because he will have to read up on it, since he won’t have a clue what your talking about. Note to self- tell Dr. F about your AS during your next visit.
Question 8- Fusion. I personally have no fusion in my spine so I cannot assume what someone with fusion feels like. I know that it hurts to walk without my back straight so I cannot imagine what it would be like to walk any other way. Fusion of the lower spine is most common and is used to “confirm” the AS diagnosis. BUT not everyone with AS has fusion and many of the doctors won’t diagnose without this fusion. So get a new doctor and if they are the only one in town, drive to another town!
Question 9- Pain Medication. Can you believe if your in pain a doctor may NOT give you medication because he thinks you MIGHT get addicted? Really! Then there are doctors who give you pain meds but not the anti-inflammatory. I guess it depends on how your luck is when it comes to getting good doctors these days. I was on anti-inflammatorys for years and then they no longer worked. Unfortunately for me I had to be put on steroids which worked for a while 4x a year then the inflammation was so bad I had to go on it daily. But back to pain medication…it is a saver for those really bad days but you don’t want to have to take them all the time for ever because in the long run it is NOT A GOOD THING!
Question 10- Family History of AS. This was a cool question because my mom always says when my AS comes up “I wonder who you got that from, because no one ever talked about their back hurting”, yes mom I know, no one ever talked about pain back in them olden days…. Some people can link a lot of people in their family who had AS, which is amazing. Some even know who they got it from. My understanding was that the women were carriers of the gene and MEN were the ones who actually got it… funny hu. So I would always tell my mom that SHE game it to me! Now I know this isn’t true and anyone can get the gene. And we all no it’s not just MEN who experience the benefits of AS as well. AS was previously known as Bekhterev’s disease, Bekhterev syndrome, and Marie-Strümpell disease and has been around for a long, long time. But like my mom said, people didn’t talk about pain because it was usually attributed to work. Women stayed home but they worked and if they hurt they just attributed it to working all day in the house. So if you know who you got your AS from, kudos for you, I’m just going to keep telling my mom I got it from her!