ask: I know I have AS..docs here either don't know it or arent interested because I can still walk.
I live in Florida, where good docs are at a premium. I have had these symptoms since I was 19 or so. It was a slow progression, so I pretty much ignored it until about 10 years ago. My hips cracked and hurt, my neck clicked and was stiff and hurt. I had two bone scans that showed a lot of inflammation...yet nothing else was done. Xrays. NSAIDS. They just gave up, thinking I was drug-seeking or something. I never got any. But here's the thing. I have two children, I am 43 and now it's horrible. I cant keep up with them or the housework, I get exhausted and weak and can't do much. I feel old, whereas I was always active before. I walked everywhere. I am not overweight. Why has no one ever cared enough to help me? Now, after trying many docs, I gave up. It's bad now, and I have no insurance. I do not want to see myself in a wheelchair with my girls. I will kill before I do that. All the docs said oh you are the wrong sex, too young (!), are Hbl27 (whatever its called) negative. It's not Lupus, RA or anything else. It's just some sort of arthritis (even tho I am not getting plantar fasciitis and achilles tendinitis). This is extremely frustrating to me. How do I get a doc to listen???
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Anon,
Welcome to EmpowHer, and thank you so much for writing. I'm so very sorry that you have had these experiences, and especially that you have been dealing with these issues since you were 19.
Don't give up. At EmpowHer we hear a lot of stories from women just like you. In fact, our founder, Michelle King Robson, had a story very much like yours -- she received treatments that didn't help her, and had difficulty finding doctors who could or would help her. That's why she started this site, so women could share information and help one another find answers.
I am not completely sure what AS means. Do you mean ankylosing spondylitis?
I am going to assume you mean ankylosing spondylitis, since you mention the HLA-B27 gene. 90 percent of the population of people who have this illness have this gene, which is why doctors may be ruling it out for you. But it is possible to have ankylosing spondylitis without having that gene. Also, more men than women get the disease. I'm not sure why they would say you are too young, since even the Mayo Clinic website says the onset is usually between adolescence and age 40.
Were you also tested for the HLA-DR4 gene, which has been associated with RA?
Where do you live in Florida? (Just city or zip code will work)
How long ago were your last bone scans and X-rays?
Have these tests been done by a rheumatologist, or your regular doctors?
Do you or have you had anemia? It often results from the chronic inflammation that ankylosing spondylitis patients experience.
Here is a link the Mayo Clinic's page on this. Be sure to also click on the links down the left, which lead to more information on treatments and drugs, complications, risk factors and so on:
http://www.mayoclinic.com/health/ankylosing-spondylitis/DS00483/DSECTION...
Have you found the website for the Spondylitis Association of America? It is the largest non-profit in the country fighting spondylitis, and their site is full of information and resources:
http://www.spondylitis.org/
Much of the information is available to everyone. But if you can join the SAA as a member, which costs $35, you get access to their recommended rheumatologist directory, which might help you find a doctor more experienced with your condition.
Here's their page that talks about this directory:
http://www.spondylitis.org/patient_resources/rheumatologist.aspx?PgSrch=...
Are you near Clearwater, Deland or Miami? There are ASS support groups there:
http://www.spondylitis.org/patient_resources/support_groups.aspx
Anon, please take a look at these links and see if they are of any help to you. If you can answer the questions I have above, especially about where you are located, we may be able to help you further. And in the meantime, I'll make sure Michelle sees your question. She cares very much about women going through situations like yours.
Your girls need you, and they need you to be the best you can be. Believe me, they don't care if you are in a wheelchair or walking upright as long as you are here and loving them. But we need to help you find some help and treatment so you don't feel so desperate. Please write back to us and let's see what else we might be able to find for you.
March 26, 2010 - 9:01amThis Comment
Thank you Diane. yes, I mean Ankylosing spondylitis. I think I fit the bill for everything except the Iritis. but that's enough. I am so mad at the healthcare in this area, and in the country lately in general (I know there are a lot of good docs, just dont know who they are) that i just gave up after i had my first daughter. I am 43 this sunday, and should be pretty healthy. aside from this, I am. I do live in Clearwater, fl. I dont have insurance right now, because my husband is unemployed, but have been trying to get medicaid. actually, just today, to add insult to injury, I was bending over to get my littlest and something went *pop* in my back and let's just say I had to put her down real fast and call for daddy. Youch!!!!! I am sitting here with a heating pad on, in agony. just more back pain. but...ok...
anemia. yeah i am a bit low in iron, but not bad. I tend to eat a fair amount of red meat and fish. like I said i havent been to the doc in awhile for something other than pregnancy related things. my last two bone scans were done here in 2001 and one in 1999 in sydney australia of all places. they both showed a lot of inflammation, but the one in Oz was a Rheumatologist; he gave me arthrotec and didnt know what else to do. the one here was a GP and ordered it, and probably didnt know what to look for or how to read it. he said the same thing and left it at that. when i told him how could we go further, he said we didnt have a case. but in my opinion...pain means something is amiss, especially chronic pain. hence, my giving up. one doc actually said AS is for old men, and why would i have it????
I just dont know what to do anymore. if I was single, it would be one thing. still a burden, but one thing. but having a partner with two small kids is becoming more than a burden; its becoming scary. all day today my hubby had to basically carry the baby and do everything;something i am not used to, nor he. i just feel like if you are not bleeding out of your eyes, you arent important. but they have so many drug seekers and no-goodnicks here that manage to get all this pain medicine for nothing...and i just want to be treated according to my need for it, not for any other reason. thank you.
March 26, 2010 - 6:20pm...and something else. after I had my first daughter, about a month later, my back pain reallly started. I couldnt stand up straight when holding her, nothing. It was so weak. so I called the OB and asked her what was going on. she couldnt have been less interested; she, like everyone else, said 'oh, you just had a baby, its from that, take motrin'. I just didnt know where else to turn.
March 26, 2010 - 6:22pmAnon - You are among many, many people who are having difficulty right now due to insurance issues that are compounded by the high unemployment rates. Although it can be difficult, and may take a lot of time and effort and even some battles, there are resources out there to help people with funding to cover prescription drugs that have become unaffordable. Diane has provided information about support groups. Patient organizations are often the best resource for information on prescription assistance programs, good doctors, resources, and more because they've helped others in the same situation that you're in. I encourage you to turn to the Spondylitis Association for support, and wish you the very best. You just can't let others get you down. Take care, Pat
March 29, 2010 - 6:04pmThank you, Pat. it's just hard...i cant get Medicaid because my hubby is still barely on unemployment; you know the deal. Let's hope once he loses it for good I can hop on the net and apply again. thanks for your kind words...I guess I never realised how hard it was out there, I mean I was aware of course, but it just doesnt seem right. thanks
March 29, 2010 - 6:32pmAnon - It's VERY hard, but I want to encourage you. Just doing the research and finding the right support takes time, and you can start on that now, whether you have insurance or not. Not every assistance program is online. Not every program makes you wait. Please don't give up on yourself. No, it's not right. Yes, it's very hard. But you and your family deserve more than you have right now, and you're worth the effort and the more you know the more you can do. I wish you the best.
March 29, 2010 - 6:49pmThank you very much!
March 30, 2010 - 6:23amI know recently doctors have found multiple genetic mutations that can cause Spondylitis. They currently don't have these other genetic tests available to the public due to costs. But perhaps you need to try a rheumatologist. I have the same type of symptoms (as well as an underlying autoimmue disease of the eye that is commomly connected with Spondylitis) and although I was HBLA27 negative I was able to get help using Humira. I see a big difference in my ability to function. So don't give up. I also know Humira has assistance plans to help people who cannot afford the meds. Hope you find help!
April 1, 2010 - 10:29amTo the Anon from Clearwater who originally wrote this question: I wanted to be sure you get the Clearwater support group information. They met in March and have not updated the site yet with an April meeting date, but there is a phone number you can call:
http://www.spondylitis.org/patient_resources/sg_clearwater.aspx
And to the Anon who just wrote about her experience on April 1, thank you so much for chiming in, and for the information about Humira. If anyone out there needs financial help with Humira, here is their page on people who qualify:
http://www.humira.com/Global/FinancialHelp/Default.aspx
April 2, 2010 - 9:27amIt can be hard to go to another (and another) doctor when you have had bad experiences but you must find another one and try to give a concise description of your problems to a rheumatologist. There are clinics, call your country to find out where it is. Have copies of your bone scans to show the problem and keep costs down.
The really good medications offer financial help so don't give up. The links to SAA are excellent, go there.
May 11, 2010 - 4:52am