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#269462 - 12/03/14 04:37 PM Monthly pain for 3 days
Chelbird Offline
Registered Visitor

Registered: 05/03/06
Posts: 193
Loc: Seattle
My rheumy denies any hormonal link to a flare I have been having. Every 28-30 days I go through 3-4 days of intense whole body pain. Its not just the joints but muscular as well. Almost like whole body aches when you have the flu, I can't hardly move my arm. Its hard to believe its not somehow related to AS but I guess AS doesn't allow us to have other pain.

I have an IUD so I haven't had a period in years but because its occurring every 28-30 days I am assuming it is hormonally linked.

Does this sound familiar to anyone?
-Chelsea, 40
AS symptomatic since age 12, diagnosed at age 30.

Hip replacement, multiple lumbar surgeries, both shoulders and nearing bi lateral knee replacements.

Simponi, Fentanyl patch. Off oral meds due to GI issues.

#269463 - 12/03/14 05:45 PM Re: Monthly pain for 3 days [Re: Chelbird]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1741
Loc: MS
I don't know anything about IUD's, but if it is true that you continue to have monthly hormone cycles with it, then it seems possible that you could have PMS during those cycles. PMS can cause joint and muscular pain and flu-like body aches.

Just a stab in the dark. Maybe you could ask your ob/gyn about it.
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

#269469 - 12/04/14 03:23 AM Re: Monthly pain for 3 days [Re: Chelbird]
Shirley Offline
Registered Visitor

Registered: 10/24/11
Posts: 971
Loc: Wellington, New Zealand
When I was on fortnightly humira and weekly methotrexate, I used to say I had three cycles - my weekly methotrexate cycle, my fortnightly humira cycle and my less regular menstrual cycle. Towards the end of each I would notice my symptoms would get worse - the real fun was when they coincided...

I seem to recall a thread some time in the past about the impact of the menstrual cycle on AS symptoms and lots of women noticed things were worst towards the end of the cycle. There was also some evidence that we feel pain more at that time.
Peripheral and axial AS diagnosed October 2011 aged 50, more than 15 years after the symptoms started. Also PCOS, GERD/oesophagitis/dysphagia, IBS, asthma,chronic rhinitis. Taking enbrel, methotrexate, folic acid, omeprazole, vitamin D, metformin, steroid inhaler and eating low starch/low GI.

#269476 - 12/04/14 01:34 PM Re: Monthly pain for 3 days [Re: Chelbird]
Beth Offline
Registered Visitor

Registered: 07/13/10
Posts: 750
Loc: Northern CA
I don't have any muscular type pain, but I definitely notice an intensifying of my joint pain during my cycle. Mine seems to start getting worse about 3-4 days before my cycle, then about 2-3 days in it goes back to the "usual". If you can call it that. LOL

#271534 - 05/31/15 10:00 AM Re: Monthly pain for 3 days [Re: Chelbird]
uplate Offline
Registered Visitor

Registered: 10/13/13
Posts: 33
Loc: Sydney, NSW
For some women the perception of pain can increase during that part of the cycle so it's not necessarily indicative of a flare. Try to avoid doing anything you know will be painful during those few days a month (like go to the dentist) because likely you'll feel the pain more. I'm guessing you feel washed out as well, have low energy? The effect it has on energy levels, metabolism and cravings is well known in the fitness community, athletes on the extreme end of the training spectrum notice changes in recovery, energy levels, pain perception, performance and are more likely to cheat on their diet during this time. I don't know if you already take (or can take) NSAIDs but you may want to ask the doc about something like Naprosyn, it's more specifically used to treat period pain (I don't have a cycle to speak of either having had a hysterectomy but I have my ovaries so still get pain). I've found taking it before the pain really kicks in best, apparently it's more effective taking it early and doesn't work for some at all if taken too late.
Diagnosed with AS in 2013, symptomatic since 1989

#272036 - 08/18/15 11:37 AM Re: Monthly pain for 3 days [Re: Chelbird]
Lyra Offline
Registered Visitor

Registered: 02/25/12
Posts: 99
I think there's DEFINITELY a hormonal component to AS pain, or at least there can be. I've had rheumatologists say so as well, without my even bringing it up.

In fact, I was able to use "regulates hormone-related AS pain" as my "medical reason" to get prescribed birth control by my Catholic grad school's health center. I did find that being on the minipill was helpful for me in that regard.

re: the idea that the perception of pain increases at certain times of the month, that's definitely true/possible -- but since pain is a subjective experience all the time, is there really any difference between increased pain and increased perception of it? Hmm, deep thoughts.
[+] 33, HLA-B27, advanced sacroilitis, recurrent iritis.
[+] Diagnosed with AS February 2012. Symptoms started in early 20s.
[+] Currently: Humira, Voltaren gel, bupropion, venlafaxine. Failed Enbrel & oral NSAIDs

#273590 - 03/12/16 03:13 PM Re: Monthly pain for 3 days [Re: Chelbird]
Sabrina M Offline
Registered Visitor

Registered: 01/28/08
Posts: 15
Loc: CA
I notice more pain every 30 days or so (I keep a pain journal) so it does make sense that it is somehow tied to hormones. Since I had my last child and I was breastfeeding for 2+ years, I haven't had a period in years, but the increase in pain, fatigue, irritability, and food cravings still happen every month. :-(

#277555 - 03/17/17 02:01 PM Re: Monthly pain for 3 days [Re: Chelbird]
Kris44 Offline
Registered Visitor

Registered: 03/23/16
Posts: 7
I definitely get greater pain in the week prior to my period. From my reading, hormone fluctuations definitely effect arthritis. That is why there is such an increase in dx of rheumatoid arthritis in women post menopausal, because estrogen helps buffer against inflammation and it dramatically decreases post menopause. So, there truly is a biological and not mental component to a premenstrual increase in inflammation and pain. Estrogen begins decreasing in the week before your period starts.


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