No guys allowed!! OK, you guys can read it, but it may creep you out. I have a question about if/how your period affects your medical condition. Do you find that at certain times your joint pain, swelling, etc. is worse? Is it worse when your period starts? Or at any other time during your cycle? I've noticed that at the start of my period my joint pain and muscle spasms come back and I'm thinking it's because my estrogen level has dropped at the start of my period. Of course, there's always that killer headache, but I've always had that at the start of menses. What's your experience?
Actually - it would be the testosterone and pergesterone that rise in ratio so that your mense can start. At least that's what I've read in the past.
And yes - when I switched from the 6 months between 'attacks' to monthy - it came on with mense.
I kept trying to get the Great U to check my thyroid but they said 'no'.
Pip
I definitely hurt more in the week prior to my period, and for the first few days of my period. And it's all joints, not just my normal problem spots.
So much of this is interconnected with hormones - that I am sure about!
Yep, when I would have my period prior to being dx, yes the whole body would hurt and I couldn't move around. Much like it is every morning now.
Have you talked to your Doc about the corrolation and possible steps you can take?
As a matter of fact, I did just have my yearly OB/GYN exam last week and talked about the relationship between hormones and RA. I didn't talk about the worsening pain during my period because I don't get it every month with the hormones I'm on, and I forgot about the connection until this last period that just started, when the joints in my hands started screaming at me. Anyway, my OB/GYN was very enlightening. I'd always known there was a strong hormone connection with my joint/muscle pain and stiffness and I've always felt, in the back of my mind, that if I just increased my estrogen, I could avoid all these other scary RA drugs and be done with it. Estrogen worked before and I was of the belief that I didn't have a true RA type joint problem because my blood work is so undifinitive and because the increased estrogen eliminates all my symptoms. I thought there was some kind of joint pain that was totally separate from any type of arthritis and was only hormone or menopause related and that's why the increased estrogen helps so much. Not so, apparently. First, some of her RA patients do very well during pregnancy and/or high estrogen times and others do terribly. I knew this and it always confused me. Apparently, the joint problems are not CAUSED by the lack of estrogen, it is merely the trigger of that pain and those symptoms. The underlying disease is still RA, lupus, whatever. The blood tests are what they are and menopause wouldn't have anything to do with those results, even as scattered as they are. This is probably old news to many of you, but it corrected a major misconception on my part. Now I have to ask the RD, if I'm not having pain if I increase the estrogen, does that also mean there is no damage being done and that nothing more sinister is going on behind the scenes? I tend to think that because of the high ANCA I had, which is now normal, he'll want me to stay with the MTX and Plaq. My OB/GYN agreed that estrogen, even with it's own side-effect issues, is less scary than MTX, but wouldn't go so far as to say I could replace increased estrogen with the MTX as treatment.
Once again it's good to know that my period joint pain is not unusual. One less thing to worry about. Do you think that it means the disease is not really under control? Have any of your doctors discussed this menstrual link with you and advised you to tweak your meds?
And Pip, I think we're still saying the same thing essentially. The increased testosterone/progesterone shifts the balance and makes the estrogen less effective at keeping the joint pain in check. That's my take on it, anyway. I've been wrong before (see above).
This is kind of related... I always know exactly when I ovulate and which side. It feels like a pin prick and an ache for a day, then I have a massive 3 day headache. I've always been like this...
Owiedeb, yep, had that too in my younger days. Now, it's just the massive headache, and the joint pains during my period only started in the last year. I guess that's because the RA or whatever it is, has progressed over the years. Great.
There definitely is a pattern out there among many RA women. Very interesting.
Jesse -
I'm not sure I agree with the OB/GYN - figures, doesn't it. I'm not sure they really know all the links yet. Here's my thinking. I've only read of one person not going into Pregnancy induced remission. I'm sure there are more out there but...most of the posts say something like 'just after the birth of my baby' or around peri-menapause, or for a lot of JRA'ers (not all - we know that) they went into a teenage remission from 12-ish on OR it came on with mense starting. It may not be the CAUSE but it sure looks like a FACTOR to me.
I think there is some sort of balance. I wish I could describe it better.
Pip
My OB/GYN would be the first to admit they don't have all the answers. She even said, "Medicine is not a science, it's an art that uses science." I think what she would say the FACTOR is, is that it's triggering the disease that's already there, but the hormones didn't "give" us RA, heredity or a virus or some other environmental factor did. But who knows? Since they don't have all the answers, it still remains to be seen what the true cause(s) are.
So Pip, do you think then that when all the symptoms stop due to increased estrogen, the disease is no longer there or just under control?
Well as you are passing theories back and forth, I do have to speak up and say, I don't have RA. I have OA. And I am hypothyroid. And I definitely have increased joint pain before my period.
So I believe there is definitely a hormonal connection, but I don't think you can necessarily attribute it to RA.
Hormones have an impact on every system of the body, and clearly have an influence on joints. The hormonal changes a womans body experiences with pregnancy change the joints in her body, softening them for lack of a better term, in preparation for carrying a baby and delivering it. One of my first symptoms of pregnancy was popping and cracking in my joints.
Also, the hormonal imbalance caused by a poorly functioning thyroid causes joint pain as well. That is one of the symptoms of thryroid disease.
Hormonal balance clearly effects our joints, but I don't think it is a product of RA, or OA. I think perhaps if there is already an existing problem with your joints it is aggravated by hormonal fluctuations. Another factor may also be the fluid retention caused by hormonal changes - does that have a part in it too?
Lots of questions, no clear answers from me - maybe other more scientific minds can figure it all out!
Ooooh! I love convo's like these!
Fantastic point, Honey, about the OA.
What if I change my hypothesis to "Factor in getting an AI disease?"
Dr. Brown said these AI diseases are more similar than not. The gene that kicked on for me was PRA but for somebody else it could just as well have been the gene for Lupus. Or Scheroderma. Or whatever.
Fluid retention could be a factor - especially for those who are overweight (ah, that would be me). I've seen research that says 'fat' acts like an 'organ' and holds in (extra) estrogen. So, fluid retention and dropping hormone levels could be a factor in the onset - especially after childbirth.
And years ago I had a child development class and it went over things that were happening at each level for each age group for children. I don't remember much about the class except being surprised that the hormones don't just come on at puberty. Something about different systems come online slowly and at different times AFTER BIRTH. The growth spurts in the first year is one time. Then the 2-3 year spurt. Then the 4-5 year spurt. Any of those could account for the JRA people too.
Am I babbling here? I hope not - just typing out loud. LOL
Jesse-
If I had to guess, I'd say it was 'controlled'. To get rid of the disease we'd have to address all issues that got us sick in the first place. The mineral deficiencies, the infection, the 'leaky gut', the hormones (so what do we do if we're not thru menapause - anybody want to venture a guess?) etc. Rewind all of them and there's no reason to think the body can't get rid of the disease. That's my story and I'm sticking with it! LOL
Jesse - I am 7 years into menopause now, but what I remember so distinctly would be feeling fantastic for about a week after my last menses. Then, like a slow-moving train, this series of predictable symptoms would start and just kept coming on faster and faster until BLAM the train would hit the wall, and the next day I always started menstruation. It was like clockwork. And the day before I would either: 1) cry over a broken fingernail or something stupid; 2) almost start crying over a broken fingernail or something stupid. That's when I knew what would happen the next day. I puzzled over this monthly cycle for decades. Great topic. Sorry guys, you just have to put up with us Jesse, yes, I have more RA flares before my period than at any other time of the month. And as soon as it's done, so are the swelling, stiffness and general aches and pains. [QUOTE=Hillhoney]Hormonal balance clearly effects our joints, but I don't think it is a product of RA, or OA. I think perhaps if there is already an existing problem with your joints it is aggravated by hormonal fluctuations. Another factor may also be the fluid retention caused by hormonal changes - does that have a part in it too?
[/QUOTE]
Hill, it sounds like you're saying the same thing my OB said and she was only referring to joint pain in general, not just RA. It's sooo true that every part of our bodies are affected by hormones. I just thought my joint issues were a menopause problem and not an arthritis problem, be it OA or RA or whatever. On the flip side, now I'm worried why I used to have panic attacks during perimeno. which also stopped when I started hormone therapy. Again, I blamed menopause, but if the OB is right, something else is the real cause (yikes! what?!) and the hormones are just the trigger. Ugh!
It's clear by your posts that hormones do in fact affect our disease symptoms and it's not just in my head. Since there are so many things that come and go, I sometimes wonder if my mental state is making some of it up, but I guess not since you all have similar experiences. Thank goodness for that at least.
Ladies, you are a wealth of information and I'm learning more all the time. Doesn't it frustrate you no end that there are no concrete answers for this? I don't blame the docs, I think they're doing the best they can. I just want to know what's going on, once and for all. I don't like puzzles. They make my hair hurt!!!
Hey cool thread.