Hi thanks for letting me join your group
Welcome Heather! I go to a chiropractor on a weekly basis, as well as a pain management clinic weekly for nerve blocks. My chiropractor is a saviour, he does much more than just adjustment, he helps me with physiotherapy, massage, and sometimes acupuncture, all for the price of one adjustment. A lot of chiropractors are in it for the money, and are more than willing to scam you. You must find one similar to mine that actually wants to help people, not rob them!
Thanks Jen. I have a good Chiropractor. If it wasn't for her I'd still be waiting on a diagnosis as my Doctor was clueless.
My hubby wasn't all that supportive until he saw the "pain" I was in. When I have a flare-everything is different. I am in so much pain I can barely move. Just getting from point A to point B is a challange. Work knows and my supervisor is supportive. I have burned out all my sick time though and had to register for the Family Medical Leave Act. Saves my position but if I use a day under FMLA-I don't get paid. Still happy to have the option. Friends who love me try to understand and are supportive. I am a pretty upbeat person and when the pain hits-I am junk! The see the difference. Some have known me long enough to know that something was going on. Hang in there and use this site for questions and rants! We are all in it together!~ Face #904 Lisa Crowner
Xxxxxxx Yzzzzzz, I don't expect anyone without this disease to understand, then when someone does it is a gift. A lot of people are trying to be supportive when they share their problems. It can be irritating when we just want someone to listen. I have found it is best to not talk about being sick all the time- it burns other people out and it makes me focus more on my pain and problems. Much more fun to talk about a fun movie I just saw or a new craft project I recently started. I try not to talk about being sick with my husband on a regular basis either. Although, I try to let him know when I am having a bad day and really struggling. He sees the days when I can't walk and understands more than most people. It has taken me years before I really understood how much he did understand. I am on disability, but when I was working I found that my employers and coworkers did not understand. If I wasn't limping, then they would just forget I struggled with daily pain.
Unfortunately, not many people believe pain until they can actually see it. In my father's case, the doctors didn't believe his pain when he was younger, or they passed it off as growing pains. Doctors didn't believe anything significant was happening until he started to develop deformities from his RA. At least now there are tests and imagining diagnostics to help figure out what is REALLY causing the pain! The past 50 years have been a medical breakthrough for all types of arthritis. There is even new research for AS, about 6 years ago when I tried to research it the first time, there was hardly any information. I looked again a few months ago when I was diagnosed and I found so much more!
I too was looking for someone who could truly understand what I was going through, which is why I turn to support groups like this one :)
My wife understands but none of my family really gets it. I do go for a massage once a month & that really helps alot :-)
Google "The Spoon Theory" written by Christine Miserandino. I've shared that with all my friends and family and they seem to understand better what chronic pain and fatigue is all about.
I keep telling them when they seem to forget. You have to sometimes be assertive to protect yourself. Never mind what they say - you know what's going on and you know what you need. A good book to read is 'Chronic Resilence.' It tells you how to deal with people who don't believe you're sick. To hell with them. Bring your employer a note from your doctor and a sheet of information as to what AS is and does. You've then verified your illness with your employer. In NYS, where I live, you can get fired for any reason and I've been 'let go' simply by a jealous female boss. So take your chances with your employer and be assertive with your family and friends. Regardless of what they think, you are actually sick and need to take care of yourself.
Thanks to all of you. My friend had sent a long text about his back. I replied with a short one, empathising, and included a link to the NASS website and said I think what I have is a bit different to his problem but I liked his idea of trying propolis supplements to reduce inflammation so I have ordered some. Not heard from him yet. When I was first diagnosed I was embarrassed and didn't know how to tell people for fear of being judged. I started of by saying I have a form of Arthiritis. Now I've learnt how to say Ankylosing Spondylitis I tell them exactly what it is. If they judge or find it amusing then they'll be one less thing for me to worry about. To be fair, no-one has done either to my knowledge. I was probably worrying unnecessarily. I really appreciate you all replying x