#161130 - 11/08/09 12:01 PM
Are women's symptoms different than mens
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daisy51
Registered Visitor
Registered: 09/22/09
Posts: 98
Loc: Canada
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If its true that the majority of women are diagnosed later in life than men?? Besides the presumption that its considered more of a "man's disease" Is there a difference in a woman's symptoms and where in the body or joint they start?
In other words what symptoms bothered you enough to send you to the doctor in the first place and what finally got them to notice?
(I also read the posts about hormonal changes, which believe me fit into my life story. Female problems from the get go)
For me: At the age of 46 I finally went to the doctor with right flank pain which progressed into groin pain and low back pain after exertion. Bursitis, tendinitis of the hip. I had always had pelvic pain which was supposedly caused from scar tissue. My si joint went out on me a year after they discovered degenerative changes in my hip joint.
I was told this year I am hla-b27 positive I am now 52.
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#161174 - 11/09/09 10:22 AM
Re: Are women's symptoms different than mens
[Re: daisy51]
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daisy51
Registered Visitor
Registered: 09/22/09
Posts: 98
Loc: Canada
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disregard this posting, I noticed that there was one done similar to this one, thanks
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#161231 - 11/10/09 06:26 AM
Re: Are women's symptoms different than mens
[Re: daisy51]
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dixiet
Registered Visitor
Registered: 09/18/07
Posts: 14
Loc: South Georgia
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I don't have a diagnosis of AS, my rheumy is treating me for chronic joint pain and stiffness, and osteoarthritis, although he says I have it in alot of areas for my age.
I was struck that your story sounds alot like mine. When I was 28 I developed left flank pain that came around into my pelvic area. My gyno noticed my SI joints were inflamed. When I was 35 I had a hysterectomy due to huge fibroids, followed a few months later by adhesion removal in pelvis. I continued to have the back and pelvic pain for 2 more years, drs saying it was the scar tissue. 2007 I was referred to my rheumy, primary dr thinking fibromyalgia due to more problem areas, hip and knee bursitis, neck problems, in addition to the SI problem. I am now 40 and take indocin which has improved my symptoms (including the pelvic pain).
Edited by dixiet (11/10/09 06:27 AM)
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#161242 - 11/10/09 08:36 AM
Re: Are women's symptoms different than mens
[Re: dixiet]
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daisy51
Registered Visitor
Registered: 09/22/09
Posts: 98
Loc: Canada
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Dixiet, Thank you for posting!
First of all have you been tested for hla b-27?
I can't believe how similar our stories are, wow! I had a hysterectomy for fibroids and they found that my ovaries were covered in cysts so they wedged them again but his time the cysts tangled inside my pelvic area attaching to muscle, bowel and even the ureter to my kidney, approximately a year later I was rushed in for a oopherectomy and they took both ovaries, what a mess. I was around the same age as you were. I was also told a few years ago that I could be developing fibromyalgia from my gyno.
Now I've lost so much range of motion in my hip joints that if I even turn the wrong way it goes into painful spasms, yet other than the joint space being small and I have a slight bulge at the si/L5 nothing else is showing up.
Now my wrists are painful, swelling and lump on my right hand in my middle knuckle, now the tendon to my elbow is inflamed. I'm waiting for surgery on my shoulder for my AC joint is arthritic and pinching my tendon. The list goes on...
I am waiting to see a rheumy and am considering going back to my regular doctor to see if I can take something in the meantime.
Please let me know what your blood work has shown? May I ask what indocin is?
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#161314 - 11/11/09 06:02 AM
Re: Are women's symptoms different than mens
[Re: daisy51]
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dixiet
Registered Visitor
Registered: 09/18/07
Posts: 14
Loc: South Georgia
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Here's a few more similarities (sp?): I was having problems w/ inflammation in my AC joint in my shoulder last year, my rheumy noted it and that was when he changed my nsaid to indocin, which has helped so much (as I already said). In his words I have poor range of motion in my neck for my age, my rom in my back is better, I reach below my knees when I bend over-not near my toes. I also have the elbow thing going on right now, it's red and slightly swollen. No he hasn't checked for the hla b-27, nor taken images, he doesn't think I've had problems long enough for anything to show up yet. As I look back, I've had minor problems since childhood. Fortuneately, my problems would be considered mild/moderate, but they are progressing.
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#162814 - 12/06/09 06:39 AM
Re: Are women's symptoms different than mens
[Re: dixiet]
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balletfan213
Registered Visitor
Registered: 12/06/09
Posts: 3
Loc: New Jersey
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My diagnosis - first flare? Same age and symptoms as my grandmothers. Her father flaired during WWI.
My Rheumy says the few cases he's seen in women in his 30 years of practice? We tend to be in our mid 30's.
He also didn't expect it in me due to my ethnicity. But then we asked what my European background was (My father is black/irish/cherokee my mom French/German/Irish) he said my symptoms made sense.
He does a lot of research on this disease. A LOT. Not just treating but discovering why this happens to us. My symptoms and relation to an injury prior to a massive flair are almost point by point what soldiers from Germany/France were reporting during WWI to their respective armys' physicians.
This is only my second post here and I put this on the age you were diagnosed thread too . . .
I'm a former ballerina. I've always danced, done bar work, and took up belly dancing/hot yoga about 3 years ago because of 'back pain'. His thoughts were by moving my joints I might have delayed a full flair and kept my joints (back especially) limber and working - but it was inevitable due to the gene. I would have gone on in pain for 10-15 years while the disease progressed had I NOT had an injury which flared it up. So I'm kind of thankful (LOL) for walking into a wall (albeit shiny new glass ROTFL) this past February.
I think back to coming off a plane from France in November 2007 and having 'thrown my back out' when I was getting my luggage at Newark airport. Having to wear knee braces on the elliptical machine. How GREAT I felt after being on the Reformer in a Pilates class.
A lot of things made sense. :-)
Symptoms v. Treatment???? He has me following a mostly 'raw foods' (nuts, berries, anti-inflammatory veggies) and lots of high fat fish diet. Filtered flat water, avoiding dairy. It's not a 'cure' - but he believes for women the better our diets are and the more fiber rich - the easier our symptoms are. So though my symptoms might be the same as a man . . . On top of Enbrel once a week - he believes in treating with nutrition.
I also had IBS symptoms a few years before being diagnosed and started with eczema again (had it as a little kid). So his research and treating women over the years??? Our digestive systems are directly related to our immune systems. Our chemistry and bodies are different - and he tries to avoid the stomache bleeding pain killers. I took Nanoproxen for about 6 weeks while he was doing diagnosis with my GP and Hematologist. Once he diagnosed me - he actually had me do a two day vegetable broth fast (home made with organic veggies steeeped in filtered water with ginger).
I haven't taken the nanoproxen since then. He hasn't seen that fast work for young men he's treated - but for women? It generally does help to alleviate a tremendous amount of the swelling. The IBS has gone away completely. I think the enbrel is what has done in the exczema (sp?) and the extreme back, knee, hip, hands and feet pain.
_________________________
Huge Motley Crue fan. Who'da thunk I'd develop the same condition as Mick Mars?
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#163199 - 12/12/09 10:04 PM
Re: Are women's symptoms different than mens
[Re: balletfan213]
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TrudiD
Registered Visitor
Registered: 01/13/08
Posts: 187
Loc: Michigan
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mine started after a stress fractured pelvis in boot camp when I was 20. within a couple months a ct scan showed my SI was thickening. I test positive for hla-b27.
I find it interesting to read about the WWI soldiers. I've talked with a few people that said their symptoms started after an injury as well. But you don't hear about that too much on the forums. The only book I found on the subject back in 1995 said the docs believed one 'form' of the AS was caused by an injury.
I personally also believe in healthy eating. I've tried nearly every diet and have had no change in my pain. Even fasting for 10 days did nothing. I got worse. My blood tests showed I have intestinal permeability (food allergies) and I've done things to help correct that. I've never had any gut problems other than indigestion at times. I do believe, though, that our gut is a HUGE part of our immune system.
What did seem to help me, oddly enough, was finding a myofascial release therapist who has been doing a LOT of deep tissue work on me. (I went on the advice of my doc and I reluctantly made the first appt). He said it made sense that my injury started everything. Somethign happened to where my tendons/muscles were so tight they started to crack my pelvic bone, which pulled everything else out of whack. The body will compensate by filling open spaces with bone. TO put a splint on the 'injury', so to speak. He's been able to greatly reduce my spasms nearly everywhere. From a chronic level of 9 to a 5. I call that success! More than any med or alternative therapy I've tried. My ribcage is stubborn, though and I need more work. Gotta get the $$ first though.
I've heard a lot of people respond very well to the no-starch diet (NSD), meaning they probably have a klebisellia bacterial problem in their gut.
I've even heard stories of people getting spondy after vaccinations (My pain started within 6 weeks of mass vaxes) and once they chelated the heavy metals out, they were pain free...
My theory is that there are several 'types' of spondy there... some started by injury, some started by gut problems, some started by chemical toxicity... This theory is based purely on my observations and experiences as I've been on a quest for my own health.
As for your original question about difference btwn men & women.... (I don't get here often so I don't know what was all talked about) ... well, women are often told we are depressed which is causing our pain so we carry on until we cannot any longer. Or we are told we are lazy. We also tend to present with more perephial pain in other joints compared to men. And pregnancy/hormones make things different and seem to slow the process down a few years. Women are more often mis-diagnosed as well. Traditional teachings of this being a 'male only disease' doesn't help either.
_________________________
~ Trudi 35 yo mum to 5 kids! dx with 'probable AS' in the middle of 1995 in the Navy. positive inflammatory spondyloarthritis dx by the end of that year. no meds really work yet. am trying sulfasalazine plus a lot of alternative therapies. www.madebytrudi.blogspot.com
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#164774 - 01/09/10 11:05 AM
Re: Are women's symptoms different than mens
[Re: TrudiD]
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mariposa
Registered Visitor
Registered: 11/08/05
Posts: 1867
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I agree that there are several triggers for those of us who are pre-disposed (genetically) to this disease.
My rheumy says the most popular theory is that there is a viral component that triggers the disease. There is also a viral trigger theory for MS.
If you believe gut problems are a part of or precursor to the disease, mine started in high school. I've had GERD since I was 14, although back then they called it an ulcer.
Then in my 30's, I was dx'd with Costochondritis. I was put on Vioxx and suffered no other symptoms as long as I stayed on it. For two years before they took Vioxx off the market, when I was in my mid 40's, I started having bouts of "flu". These were one to two week periods where I felt awful. I had flu-skin and was enormously fatigued. I felt like a hypochondriac because I didn't throw up, had no respiratory issues and had no temperature. I also had some shoulder pain that I mostly attributed to the way I sleep. My CRP was always elevated but my internist used that as an indicator to watch my heart and never thought about arthritis.
I had a kayaking accident where a slammed my knee into a rock. There was no real damage, but it hurt a lot and took over a year to finally heal. I also fell down the stairs and really hurt both my Achilles tendons. They have never stopped hurting since.
Once they took Vioxx off the market, BAM! I had all the classic symptoms that men have. Starting with SI joint pain, assymetrical joint pain, flu-like feelings and fatigue, and then pain in my upper spine with the middle spine unaffected for about 4 years.
I got my diagnosis 5 years ago and now have total spine involvement, chest expansion problems and all the other lovely symptons.
I think if my Achilles tendons had not been so involved, I would have never had the dx of AS.
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#164829 - 01/10/10 06:43 AM
Re: Are women's symptoms different than mens
[Re: winelover]
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TennisAce
Registered Visitor
Registered: 09/19/05
Posts: 1062
Loc: Boston, Ma.
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The myofacial release has done the most for my daughter. We have lengthen the time between but fond consistency and spending the money on the whole body. It keeps the alignment of her entire body. She plays a lot of tennis and it's a 1 sided sport. The therapist can see her scoliosis kick up in her back when she plays and gets tight, and she is able to release some of the pull from one side.
_________________________
Daughter diagnosed 2004; son diagnosed 2006. One takes a mix on pharma: sulfa, naproxyn and celebrex. The other one is clinical remission at the moment and not taking any drugs currently.
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Moderator: ElinAslanyan
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does anyone know if that is happening???
