Do Estrogen and Progesterone’s Rise and Fall During Your Cycle Create Autoimmune Flares? (Yes, Unfortunately.)


Girlfriends having coffeeWhich hormones fluctuate throughout the month during my cycle – estrogen and progesterone, or just estrogen?

The menstrual cycle proceeds through a complicated and highly coordinated dance of hormones.  By convention the cycle begins with menstruation.  During this time, levels of estrogen and progesterone are low.  During the next part of the cycle, levels of estrogen begin to rise, reaching a peak around the time of ovulation.  After ovulation, levels of estrogen remain relatively high, dropping off in the days leading up to the start of a period.  Progesterone levels remain fairly low before ovulation, but then remain high, dropping off just before menstruation.  Other hormones change cyclically too (such as the ones triggering ovulation), but estrogen and progesterone are the hormones thought to be most important for premenstrual syndrome and possibly symptom flares in women with autoimmune disease.

If my autoimmune symptoms seem to get worse when these hormones are high or low, is this typical?

Not all women with autoimmune diseases note symptom changes with their menstrual cycle, but many do.  Sometimes it may be difficult to distinguish a pattern, since symptom exacerbations may be triggered by many other factors.  Many women with rheumatoid arthritis, for example, report decreased joint pain in the period right after ovulation, as well as during pregnancy—both times when levels of estrogens and progesterone are high.  These women may note increased symptoms when these hormone levels are particularly low, such as during menstruation or in the postpartum period.

One questionnaire found that 70% of women with multiple sclerosis noticed cyclical changes in their symptoms, with the worst symptoms in the week before the start of their period.

Women with lupus also often note symptom flares just before and during their periods.  There is not one specific pattern that applies to symptom flares in all types of autoimmune diseases, though within specific diseases there is often more of a pattern.

Have there been any research studies about why hormone level fluctuations throughout a monthly cycle can worsen autoimmune symptoms/create a flare?

More research needs to be done on the relationship between hormone levels and autoimmune symptoms.  It is well understood that steroid hormones, including estrogen and progesterone, influence the development of immune cells and modulate the output of the immune system.

Many immune cells have receptors for these hormones, including many of the immune cells responsible for creating autoimmunity.   It is not surprising, then, that variations in hormone levels during the menstrual cycle might lead to changes in symptom severity.

Certain hormones may tend to activate a certain part of the immune system (e.g., the TH1 response, which activates macrophages) while simultaneously tampering down another part of the immune response (e.g., the TH2 response, which promotes the activation of B cells).

Some hormones, such as estrogen, may enhance the immune response at low levels while generally inhibiting the immune response at very high levels.  Sex hormones also activate specific genes, some of which may play a role in symptoms flares or symptom reduction.

Many of details about this are still being worked out, however, and most of the work that has been completed has involved animal models of autoimmune diseases or simpler cellular systems.  It is a very complicated problem to study; in a human being, multiple levels of hormones are changing concurrently, each of which might have some effect on the activity of the immune system.

Could hormone therapy help regulate my hormones to assist with leveling out autoimmune symptoms?

It might.  It also might exacerbate your symptoms or have little effect.  At this time, there is not a general clinical recommendation supporting hormone therapy in autoimmune diseases.  Research on this is in a preliminary stage, and the amount of information available varies by disease type.  For example, current evidence suggests that postmenopausal women with rheumatoid arthritis who use estrogen therapy may have fewer symptoms.  Other clinical trials of postmenopausal women with lupus have found increased disease activity with estrogen therapy.

Research on premenopausal women is also in a preliminary stage, but some evidence suggests estrogen therapy may lead to decreased symptoms in multiple sclerosis; clinical trials are ongoing.

Questions for your doctor:

  • What (if anything) is known about whether birth control pills or other hormone therapy might help with symptom reduction in my particular autoimmune condition?
  • If am pregnant, is there anything I can do to help prevent a postpartum disease exacerbation?
  • If hormones are thought to exacerbate symptoms in my autoimmune condition, what other non-hormonal options for birth control are available?

Have you noticed that flares that are related to certain weeks in your cycle?  Share your experience below!


About the Author
Ruth J. Hickman, MD, is a freelance health, science, and medical writer.  She specializes in writing about medical topics for the lay public and for health science students.  She can be reached at [email protected] or through her website:

This post contains opinions of the author. is not a medical practice and does not provide medical advice, diagnosis, or treatment.  It is your responsibility to seek diagnosis, treatment, and advice from qualified providers based on your condition and particular circumstances.  Camino Real Ventures, Inc., the company that makes available to you, does not endorse nor recommend any products, practices, treatment methods, tests, physicians, service providers, procedures, clinical trials, opinions or information available on this website.  Your use of the website is subject to our Terms of Use and Privacy Policy



  1. Avatar Vicky Hughes says

    Hi, I am a 37 year old female living in the UK.

    2 years ago I had a major postpartum haemorrhage, lost approx 8 litres of blood. I was heavily transfused. Since then, I have been increasingly unwell and have had to give up work.

    I have severe joint pain, which worsens when I ovulate, and seems to settle for a short while after my period. I am breathless and exhausted after just walking upstairs. I have a rapid heart rate, cold feet, headaches, repeat infections and hair loss. I have just had an MRI on my spine (they were looking for MS lesions) which shows I have hyperplastic vertebral marrow. I am seeing the haematologist on Monday coming, also waiting for referral to rheumatology.

    All my blood tests are fine, so it can’t be anemia or myloeddysplasia, which has been the suggestion by the hospital upon seeing my MRI.

    Would anyone have any ideas what is wrong with me? Getting desperate for some help and advice.

    • Avatar Amber Parker says

      I have a story similar to yours αnd discovered I had an autoimmune disorder called POTS (Postural Orthostatic Tachycardia Syndrome). Have all your symptoms αnd more. Before I found out what I had, I thought I might have hypopituitarism, which is when your pituitary gland no longer provides the signals that your body needs in order to produce more secretions of hormones so they can be sent throughout your body. Therefore an imbalance of hormones αnd even some thyroid dysfunction is expected. This can happen after an extreme amount of blood loss, during the time of losing that blood, a small area of your pituitary gland experienced some tissue death of cells. Well, since this gland is the brain network of telling the body what hormones it needs, it’s like a bunch of static during the communication αnd these symptoms will follow. Do some research on this, hope it helps.

    • Avatar Katie King says

      “I have severe joint pain, which worsens when I ovulate, and seems to settle for a short while after my period.” First comment. I have the same thing right now but not severe and they are testing me for lupus and all other sorts of things. Any way to decrease estrogen in the body if this is the case? Also high risk pregnancy info with auto immune? Thanks for having this site.

    • Avatar Claudia g. says

      Hi my name is claudia garcia. My story is not quite like yours but have been sick since i had my 3 year old. Bad pregnancy was ok for 1 year after but then boom hair loss severe fatigue severe joint pain stopped working my list of symptoms go on and on. But i got to say i feel much better i started cbd oil which made my pain fro. 8-9/10 to 1or2/10 I reduced my stress changed my diet to alkaline diet and down to 1prescribed pill a day. Diet i just changed 30 days ago. But i did notice a difference witb my bladder issues and overall fatigue .i hope this helps you.

      • hi claudia also have a three yr old and had ra before but been suffering with muscle wasting and severe pain since birth just wondring what cbd oil you used as cbd brothers seemed to make me much worse?

    • Avatar Jennifer Mansour says

      I have that exact list of symptoms and have SLE (Lupus) and fibromyalgia and hypothyroidism. Get blood work done soon!

    • Sounds like myositis

  2. Avatar Katie Cleary says

    Hi Vicky,
    I’m sorry for the pain you’re going through and the lack of diagnosis. I hope the doctor appointment gave you some clarity. There is a Q&A section of this website, and I can also post your question on Facebook. The Facebook AutoimmuneMom community is pretty fast at answering questions, so that might be the quickest way — let me know if you are all right with me posting it and then I can get back to you with the answer or you can “like” the page and watch the answers as they come in! It’s up to you and I would post the question as an autoimmune mom friend so it won’t have your name etc.
    Thanks and take good care,

  3. Avatar Vicky Hughes says

    Thank you so much, any help would be appreciated. I saw the haematologist yesterday, and they are not going to investigate the marrow problem, they as my blood tests are fine it was probably an incidental finding? Still waiting for rheumatology appointment.

    Please post on my behalf, maybe someone out there may have an idea what I can do next.

    Best wishes and thank you again, Vicky.

    • Avatar Katie Cleary says

      Hi Vicky,

      Ok I posted this and I’m sorry it took me a while to pull all of the responses together to reply on this. Here were the ideas:

      -Have they checked thyroid levels including TSH and reverse T3?
      -Please have your thyroid tested thoroughly as all of your symptoms sound very thyroid related. Make sure they at minimum test your TSH, T4, T3, rT3, Free T4 and Free T3 and B12, Vit D, TIBC and ferritin and ANTIBODIES, not just the TSH and T4, that is a limited picture. All of your thyroid panel can be normal and yet all of your symptoms can be present with the autoimmune disorder itself. I know, I live it everyday. This article helps to explain what happens BEFORE the thyroid actually begins to fail. Hope this helps a bit.
      -Have you been checked for coeliac? Or Hashimoto’s?
      -I’ve been sick for years. Just found out it’s late stage Lyme’s disease. It could have come from your transfusion. I would find out if its a possibility.
      -Check for Babesia that could have been in the blood transfusions !
      -Had a similiar experience at about the same age. 25 years later they reviewed my history and decided it fit into the pattern of a blood disorder. Just remember if you have one autoammune disorderyou could have more. Hope you get answers soon.
      -My guess would have been Hashimoto’s and possibly adrenal fatigue with that. That’s how we with the disease feel — exhausted, headaches, hair loss, infections, all over body pain.
      -Thyroid Pharmacist, Dr Izzabella ? Here on facebook may be helpful
      -Definitely see a cardiologist. Rapid heart rate shows your heart is under stress. I have SLE and have had constrictive pericarditis
      -I’ve had adrenal fatigue and those are very similar symptoms. Biggest part of my treatment was good whole food brand vitamin c in larger doses to heal the adrenal gland. (Get a 24 hour saliva test)
      -Sounds like addisons
      -I have a condition called dysautonomia which gives me many of those symptoms , fatique , rapid heart rate etc. I have rapid heart rate while standing and anything else I do.

      As you can see there are a lot of ideas — I hope this helps rather than overwhelm. Don’t give up and thinking good thoughts for you on your quest to find the right doctor who will listen and give a diagnosis. Please keep us posted! xo, Katie

      • Avatar Vicky Hughes says

        Well funnily enough Addison’s has been mentioned by the Haematologist, also Sheehans Syndrome, where your pituitary gland gets starved of blood during a post partum haemorrhage. My thyroid function is fine, everything they’ve tested so far is normal. I have not been tested for Lyme Disease, or a any other virus. Unfortunately, I do not have a supportive Doctor, and am at the mercy of the long NHS waiting times. I have to go back and see the Haematologist in 6 weeks when they will decide wether to discharge me from their care or transfer me to another department. So frustrating when you need answers and want to well for your children! I am touched by the responses and thank everyone for their comments.

        • Avatar Michelle says

          Hi Vicky, did you get anywhere with the NHS at all? I have been struggling along for 2 years and my doctor refuses to refer me to a rheumatologist. Your symptoms sound very similar to mine. I just want to be well for my children too 🙁

  4. I’m 30 and have had Crohn’s Disease and related Arthritis for 21 years. I also have issues during low estrogen cycle times, mostly in the week leading up to my period. I’m currently TTC and having difficulty as I have a mini flare following the time when I should be ovulating and during the time I could be conceiving. I’m having difficulty, and I’m wondering if the flares are preventing me from conceiving. The first two weeks of my cycles I feel great, aside from the normal period cramps. Very frustrating.

    • Hi M.E.,
      I hope you see this response & you’ve gotten pregnant, but I want to share something with you. My doc’s know I have a non-specified autoimmune disorder (2011), possibly Crohn’s. I’m hoping my next scope/biopsy’s (7/14/15) will shed some light on these horrible GI issues. (Symptoms: doc’s say aren’t related, but I KNOW they are…. Migraines, Swollen Joints, Mouth Sores, Nerve pain, Carpal Tunnel, Fatigue “flu-like”). Steroids always help, side effects are like hell, but it’s better than urgent, painful, mucus, diarrhea then nausea/vomiting.
      I want to you to know that I FINALLY got pregnant in 2013. It was during my BEST remission (2 months) and I felt better than I had in 2 years. A year prior to getting pregnant (2012), my Ob/Gyn wanted to remove my ovaries due to the painful Complex/Fluid filled cysts on my R&L ovaries (lasted 1+yr). My husband and I knew we wanted one more child, but I also wanted to feel “NORMAL” again. I prayed and prayed and they miraculously disappeared when I went into my 2 month remission. My OB/Gyn said we could start trying to get pregnant, but not to get my hopes up. I got pregnant in 1 month. Maybe in was the steroids treatment prior to the remission, prayers……. but I do believe there was POWER in my POSITIVE thinking. I felt healed. I was also “Flare-free” the entire pregnancy and while nursing (best bowels since 2011….you might understand, lol)! 6 months after weening nursing, it all has come back with a vengeance & my positive thinking has dwindled, but I have the most beautiful, healthy ,baby boy, who reminds me to never give up & you should not give up as well. Try to conceive when your in remission and your mind is filled with optimism & positivism. Blessings to you my love!!!!!!

      • I just read your post, I hope you get this msg. When I saw the part about your “flares” I almost jumped through the screen! I have all of these symptoms too!! I also have PCOS, post traumatic migraine & hypothyroidism. When I started getting periods at 9 I always had flu like symptoms, including vomiting & fever. That only lasted for the 1st few years. In my teens my periods became infrequent& the symptoms almost gone, my periods we light & I lucked out with no PMS. As an adult I struggled with infertility, exhausting treatments & eventually being told to give up & adopt. I’ve always had some joint issues, which I thought were mostly from playing sports or from a very severe car accident when I was 18.

        In my 30’s things started to regulate & when I was 38 I got pregnant. I ended up plagued with issues, a full previa & partial abruption. It left me on complete bed rest, 3 months of it on hospital bed rest. I had an emergency c-section when I hemorrhaged @ 7 months. While in the hospital I began having back pain, I thought it was from laying around all the time. A while after my c-section I was still not up to par & I spoke to my dr who chalked it up to laying around for so long after being active. Its been 2.5 yrs now, over that time, joints would “flare”. 1st it was places I knew I had injured, but it would happen 1 at a time, something always hurt. About a year into it, other places were joining in to the flares & multiple places would hurt all the time. I also noticed as my periods became more regular again that I had not just PMS but something more like PMDD, when I never even had regular PMS before. Again my Dr said give it time to regulate. Now here we are, the week before my periods I have energy, I still have pain but I’m ok. The week before & of, I’m so tired & hurt so much from the full body flare, PMS & 24-7 migraine, that I can’t function. The week after I slowly start to get back on my feet & the flares die down, but not completely because something is always hurting anyway. I have very bad allergies & allergies which I guess would also be considered as an immune disorder, as I have been hospitalized for my body becoming allergic to itself. So far my allergist has re-run normal allergy tests & nothing new there, I saw an RA Dr (because I have swelling & nodules on my fingers), she says I have early onset osteoarthritis, spondylosis in my lumbar which is causing hight loss in l1-2 & l5-s1(the lumbar area), some kind of benign bone lesions in my hands called sequela of intraosseous ganglia, Carpal tunnel in both hands, plantar heel spur & heel spurs, plus bunions on both sides of both feet (yep won the foot jack pot lol). She did RA & Lupus tests but said they were negative.. said my pain should be managed with advil & to go see my primary care Dr, come back when it effect my every day life. That’s why I went to see her in the 1st place, because I was sick of hurting day in & day out, with chronic migraine on top of it & no help while I chase after a 2 yr old all day. I just want to know what the hell is going on with my body & how we can manage it.

        • Kelly, any closer to an answer? So much of what you are describing has been my experience!

        • Make sure that your Dr tested you for the HLA-B27 gene and look up ankylosing spondylitis. Your symptoms fit. It’s not a man’s disease despite a lot of sites (and Drs) still saying the contrary. It often comes hand in hand with stomach issues. Also, you can still have it without the gene, it just makes it extremely likely with symptoms. Also, the presence of the gene doesn’t mean you have it.

          • Avatar Bobbi abram says

            Ok I’ve been diagnosed with Hashimoto and had debilitating fatigue and joint aches along with spinal stiffness. I went to a rehmatologist and she said I could have spondylarthritous. She test my blood for HLA-B27 and I was a negative but she said she still thought I had it even with the blood test being negative. She put me on sulfasalazine and after 3 months I was so much better with arthritis effects. Spondylarthritous is autoimmune and people need to be aware the blood does not tell you everything and if you have a good doctor they will try things to help your symptoms

        • Sounds Ike SAPHO

      • Jaime, think about what happens to your body when you are pregnant. It’s not the power of positive thinking, its hormone levels. See other comments below.

  5. I am going to the doctor today. Its been just a few days under 4 years since I had my daughter and my life has been turned upside down by these auto immune flares. I haven’t been diagnosed yet but believe me I have tried. My veins and arteries get swollen and so painful. I also get arthritis symptoms or should I say swelling in my hands and feet and knees. These are just flare ups though and usually come on during my period. I also get fatigue extremely bad. Its usually one or the other symptom instead of both at the same time but they will come after each other. I hope I get help today and I hope the doctor listens.

    • Avatar Michelle says

      Hi Sarah, I have the same vein symptoms. Mostly around ovulation or around my period. The doctor looks at me like I am stupid and says there is no such thing as vein pain. Some times they are visibly bulging on my hands. The fatigue is horrendous. Short on breath and I look like I have been dug up!
      Did you manage to get anywhere with a diagnosis?

      • Hi Michelle,
        The only thing my regular doctor found out is that I have high levels of c reactive protein in my blood (inflammation markers). She sent me to a rheumatologist but I got absolutely no where with the rheumatologist. She acted like she had no clue what I was talking about and I am guessing she is not used to getting cases that need investigating. She flat out told me ,” I dont know what to tell you. High C reactive proteins dont mean anything.” She told me we could do an ultrasound of my neck carotid arteries just to shut me up because she knew I was not satisfied with her “I can’t help you further” attitude. I also got an x ray of my hands. To my great disappointment my insurance didn’t approve the ultrasound, I guess me saying that if I do sit ups it feels like I’m having a stroke and my lower face muscles go weird wasn’t enough for them, or the migraines but I did get the xray which I knew wasn’t going to show anything because its my most mild and least occurring symptom and isn’t severe enough to cause permanent damage. I haven’t been back to my original doctor because I have no energy and each time I reach out and waste so much energy it takes me a long while to go through it again. I will go back though and I’m going to see if she can get me the approval. YES VEIGNS HURT! Its horrible isn’t it!? Its similar to the same feeling you get from slapping your hand too hard or jumping too high onto your feet, that sting. Almost like a brain freeze but in your vein. It gives me such bad migraines.

        • Avatar Nicola Houlden says

          Hi Michelle, your story sounds so familiar to mine, I normally get frustrated with people saying that as it does not help a thing, but the reason I say this is because I can very much relate to quite a lot of the things you have said, and yes your RIGHT your veins can hurt! And your right they do look at your as if to awww c’mon now I’m sure it’s not your veins that’s hurting!!!! I have this along with other symptoms as well. I’m sick of going back to the doctors to be told their sure my symptoms aren’t really like that ie/ swollen veins etc…. And am I sure it’s not just depression!! Yes I am down, down about the illness I say and yes feel low and overwhelmed by how this is affecting my life, but I know this is definitely happening! So I’ve gone of and done as much research as possible on these things and sure enough time and time again I have found these things related to a autoimmune diseases, and the thing is with autoimmune the things like sore/swollen veins etc is that they do NOT show up in any blood test and just looking at the veins in general does not give the correct answers, but in my research I have found this relates to musculoskeletal problems! I have been diagnosed with fibromyalgia so started research on this and most things related, the thing is with musculoskeletal is, it is actually the lining of the body underneath your skin that holds muscles, tendons,leads, ‘veins’ all in there place!!!! So with that a flare up or long term of this is actually the skin lining tightening therefore squeezing muscles, tendons, VEINS, and because autoimmune are inflammation, the body then sends out signals of distress to where ever is being squeezed and whatever is being squeezed swells up to protects itself, so yes it’s not a normal thing for the body to do but that’s what autoimmune is….. The body is sending out these alert cells to distroy or protect an area of pain, swelling etc, therefore it’s affecting the veins. I believe this to be very true and accurate and I really feel this is exactly what happens!! The problem is there is not enough research done into autoimmune or a direct doctor you can see which is very frustrating and upsetting, it’s a case of trying different doctors until you find one that’s either come across autoimmune before or has worked around it previous, I know this all seems long winded but just trying my best to explain, so I hope some of this helps for you 🙂 take care,,, even though some days that is all the energy we have just to literally to take care enough to get through a day, I wish you luck x

          • Have you ever looked into the role of oxalates in possibly causing or exacerbating fibromyalgia? I have a similar nerve pain disorder called vulvodynia and since I’ve been on a low oxalate diet, my symptoms have been improving. has some great information.

        • Avatar Nicola Houlden says

          Oooops, I also meant to say, the biggest thing I can relate that you said is that you haven’t been to the doctors for months! This is so me, you end up coming out more frustrated and upset than when you went in, then for days after you feel exhausted and drag yourself about then wonder why you bother doing this to yourself! I’m so fed up of that. Another thing you said you had headaches… So in my research for that I also found this to be a musculoskeletal problem, because the lining of the body is tightening it is also squeezing lightly on the blood vessels around your head thus dulling bloodflow, causing mild headache to migraine, also you said about your jaws aching, again I found this very popular with People diagnosed with musculoskeletal autoimmune and the reason being is that- again the lining is tightening and quite commonly affects the jaw, the muscles being squeezed causes a jaw misalignment with can cause all sorts of symptoms of headaches, aching jaw, a chance to your teeth and gums etc…. Again I hope this helps, I am not a doctor of course and not saying this is definitely you but I hope it’s a little bit of help which can start you of! Google musculoskeletal auto immune and autoimmune jaw misalignment, it’s quite helpful. Again hope I haven’t waffled to much and some of this helps,
          Again hope you get help,
          Nicola xx

          • Avatar Michelle says

            Hi Nicola, thank you for the musculoskeletal auto immune research recommendation. I will definitely have a look into it. I think I probably no more than my Dr on some things from the Internet. She looked at me blank when I asked her to test my ANA’s as everything else had come back with nothing. Low and behold the anti CCP came back at 386 when 60 is classed as possible aggressive rheumatoid arthritis. I just don’t think Dr’s are trained well enough in these fields. You didn’t waffle at all, we need all the help and advice we can get from as many people who suffer similar symptoms.
            Take care and thanks again.

          • Avatar Dawn Wetter says

            I chalk my jaw pain up to Trigeminal Neuralgia. I haven’t officially been diagnosed with TN, but I have other auto-immune disorders (MS, R/A) and it’s common for MS patients to have this. Just something to think about…

        • Avatar Michelle says

          Hi Sarah,
          How funny, my anti CCP which I believe is C reactive protein is through the roof. Since first posting on here I have managed to get a referral to a rheumatologist who believes it points strongly to rheumatoid arthritis but has also mentioned Fibromyalgia. I am currently having a bad time again with the feeling of inflammation inside my body and breathlessness. It really is a dreadful feeling so can empathise with you. My second rheumatology appointment went very badly. She hardly asked me anything and told me there was nothing she could do as my hands or feet weren’t bent and crippled. She could offer me chemotherapy drugs if I really wanted but I don’t want to just mask a problem when they don’t know what it is. I want to figure out what is wrong?? Have you seen a website by a Dr Myhill? She has some very interesting research on there, I have just ordered her book so will see how I get on with that.
          Thanks for the message on you take care too
          Michelle x

          • Thanks for the reply Michelle. Nicola, you had some great info to share. Im so glad we at least have each other to talk to. I know this might sound really odd and crazy but I think Im going to try out bee sting therapy. It seems to work for arthritis and fibromyalgia. Im going to try it and ill let you know how it goes . 🙂

          • Hi to Sarah, Esk I just want to say a sorry to Sarah as I jumped in on your post, not intentional hun, yesterday was the first day I’ve ever saw this site, as I was looking for info on why I would be so much worse the week before my monthlys are due! And Michelle’s comments came back in one of the searches, it wasn’t until I went to reply I realised it was a whole site and so I joined, wow looks like I have some catching up to do 🙂 I will read through the whole post and therefore get a feel for how your doing, what you have etc… And see if I have any other info I can share.
            But yeah your right it is nice to have other people who understand as people who have not had anything like this just could not understand how bad these things are!!
            It’s crazy that they don’t have specialists or a team that even work in hospitals that you can be referred to for help and to understand why these things are happening as it seems a large amount of people are left clueless and living a painful debilitating life, it’s so awful! It’s a scary thought to be out there on your own with conditions that your own doctor looks at you strangly about, take care hun xxx

          • Avatar Michelle bertucci says

            Hi Sarah, it would be very good to hear if you have any improvement with the bee venom therapy? An interesting read with regards to the autoimmune reaction and hormonal controlling system topic.

  6. Avatar belinda Quardey says

    Hi, I have been diagnosed with mixed connective tissue disease. I have noticed when the weather is warm I am relatively pain free but when there’s a change in weather especially when it’s cold I turn to have flare ups. Any suggestions as to how I can help myself when the situation gets bad ?

    • Avatar TAMMY HANCE says

      hello, I have eds and I have been having a terrible time with menopause. I am 53 and no hot flashes, still have a period every 4 weeks. I just feel like I have the flu when I should be ovulating on the 12th day…..I ovulate on the 18th day now. or I get sick when I am having my period. I feel like im estrogen dominant… estr – 61… prog -1.7…test – 45….. fsh 54…lh 32….

      • Avatar Susan Housley says

        Hello Tammy , I have been experiencing flu like symptoms for years, I haven’t had a period since September 2011 but I am still cycling. The symptoms start round about where I should be ovulating and continue on until I would have had a period.

  7. Hi, so i’m so happy to see this article and read the comments. I pray that someone reads this and may have some answers. Sometimes, I can feel so isolated and misunderstood. I’ve been dealing with relapse/remission “flare-up’s” since 2011. I thought I would get answers when I landed in the hospital with a horrible case of Colitis that took 6 months and multiple antibiotic’s to clear up the infection in my bowels. Yet still no answers. They removed my gallbladder; which did help my GI symptoms for a couple of months, but they always creep up. Especially in the hot summers months. I’m plagued with migraines they call “Occipital Neuralgia”, steroid injections and Fioricet do help. I had carpal tunnel so bad on my right hand that even after 1 year post surgery, my muscle in my thumb still hasn’t come back 100%. Now my left hand is acting up. Eye lids (upper/lower) swell like I got stung by mosquitoes; Fatigue (flu-like); Swollen joints; Cysts (Complex/Fluid filled R/L Ovaries); Nerve pain (more irritating then debilitating); Numbness/tingling in hands/feet; Sweat attacks; Muscle pain (Knots)…….yet all my doctors look at me like I’m crazy, because no definitive answers from lab/scopes. I did have 1 MRI that came back and the radiologists stated on the report that it looked like MS Lesions on the white matter of my brain in multiple locations, but the neurologist said no way.
    However, when I became pregnant in 2013, everything disappeared. Yet 6 months after I stopped breastfeeding, it has all come back with a vengeance. Steroids always clear me up, but the side effects are horrible. I also noticed my symptoms are really bad about 2 weeks before I start menstruating and stress defiantly will make my symptoms worse. I even asked my doc if we could trick my body into thinking it was pregnant and you should have heard the “crickets chirping”, she must have thought I was crazy. I wonder if I am crazy, is this all in my head, am I depressed…..but I so want to enjoy life, take care of kids, MOW MY YARD, plant flowers, go to parties, but I’m too exhausted to get out of bed or stuck in the bathroom. How do you keep searching for answers if multiple doctors can’t find out why I feel so bad? When do you give up?

    • Jamie, I feel your pain! Don’t give up! You might be on the right path! I had alot of similar symptoms. The “flu like” fatigue was the worst. I couldnt continue working being sick for 2 weeks before my period every month. All went away during pregnancy and breastfeeding(FYI progesterone is high during those times). Then it came back. I went to a doctor who’s specialty was hormone balancing. As soon as I started taking (bio-identical) progesterone and small dose of spirolactone (med for pcos, which probably doesn’t apply to you) 90% of my symptoms went away or gradually got better. The exhaustion took a few months, (I started in March) but now I’m feeling so much better I’ve been thinking about working out! There were only a few bumps with the hormones, 1st month I was emotional, 2nd month I was bitchy, we slowly kept increasing the progesterone till I found a good level. I wish you luck and hope you find a good doctor. (Try googling “bio-identical hormone therapy and your zip code” )

    • Hi there!
      Never wrote on a site before but I just had to after reading your post! Our stories are basically identical! I’m still suffering now as of today. :(. I’m on plaquinel and on and off prednisone which Im not suppose to do steroids anymore. They have messed with my bones from using them so long. Best I have felt in 10 years is when I was pregnant! I have asked so many times why they can’t trick my body into thinking I’m pregnant!? I get nothing. No response. Just looks at me like I am crazy. Ended up in hospital in 2009 with horrible colitis (with ulcers). Treated me for UC and chrones for a while but nothing got better. It kept happening so it was always antibiotics, steroids and pain meds. Finally rhuem diagnosed with MCTD some say it’s full blown lupus. I have horrible symptoms and its caused me to be depressed. I cry almost daily because I just want a normal life. Things seem to be getting worse yet none of the Drs care and just tell me it is was it is.. Take the meds. I had hysterectomy in Nov… Things have been horrible since. Just started me today on estradiol cream.. I always felt worse and had flares about 2 weeks before my period… I am also hypothyroid. Take meds for that also. I just want to go back to being pregnant! I know hat sounds nuts but I felt halfway normal! The fatigue and muscle pain is horrible.. And migraines. Sometime I wonder if I’m loosing it. Then I have to remind myself
      That it’s real! I have been hospitalized for my colon and I have had a few labs come back showing positive for autoimmune so I know it’s not all in my head. I just want to feel better… Not even great just better! How are u? Any better??

  8. I was recently diagnosed with RA. About a month ago I started on birth control again and gave since noticed a significant decrease in flare ups. When I started to think about it, I realize that my symptoms really were pronounced during the time I stopped taking birth control about 10 months ago. Now I’m wondering if the birth control is actually helping with my RA flare ups??!! Anyone experience anything similar?

  9. Hi everyone! Jovanna, are you still seeing decreases on BC? I was diagnosed at 24 with RA & took 7mos of MTX that put me in a long remission of 7 yrs or so, during that time I have had 2 beautiful girls with the most recent addition turning 16 mos. since I have had her I have noticed I have mega flares during the beg. Of my cycle which led me here… Great info & support here;) I have never been a fan of BC but if it will keep me from going on MTX again I would consider it!

  10. Hi all, very interested to read the article and previous comments. I’d be extremely grateful for any input/advice. I’ve just received a preliminary, somewhat vague diagnosis of arthritis, affecting the radial side of my left wrist and the associated CMC joint. This follows months of twitching in my left hand, which has just about ceased completely now that the pain has begun. The pain goes in cycles, as follows: at the beginning of each menstrual cycle, I will wake up one morning and be completely unable to move my thumb, which is extremely stiff and painful. Over the following 24 hours a small hard lump will develop on my wrist, which feels hot and extremely tender. Over the next week or so, I will regain movement in my thumb but it still hurts a great deal. Over the week following, the wrist lump will gradually reduce but still feel tender. Over the next 2 weeks, the pain and lump gradually subside until I am completely pain free for the last few days of my cycle. Then it all begins again. The pain on day 1 is particularly hard to bear because of the blissful pain-free spell that immediately precedes it! I also have an ongoing stiffness/pain in my shoulder, which also disappears for the last few days of my cycle. I am in my late 40s, otherwise fit and well although a bit overweight, no previous similar problems. There is some family history of osteoarthritis but no RA. I’m in the UK and have a great GP, but this doesn’t seem to be well understood and I feel I would be more likely to get some help managing my arthritis if I knew what to ask for. Is the remission of pain to do with low progesterone or low oestrogen? Should I be asking for HRT or POP, for example? Has anyone here experienced anything similar, and what helped, if anything?

    • I have been diagnosed with undifferentiated connective tissue disorder (autoimmune condition with features of RA, lupus and schogrens) I have experienced numbness in arms, twitching and also swellings on my wrists (bumps) which it turns out are something to do with the autoimmunity attacking my lymph nodes. I am in the uk too and was originally seeking help privately with my husband’s work insurance. I was disappointed with their treatment of me and have had much more success on the NHS although it took nearly a year from symptoms stating to treatment. I hope they can find what is wrong with you. The rheumatologist didn’t find any of my symptoms surprising so I hope you find someone with some good knowledge. I have found that my cycle affects how I feel, even now I am on treatment. The first 2 weeks are great, deteriorating until the week before my period which is awful! Pain levels are much higher and fatigue is worse.

      • So glad to hear someone else is the same as me, there are days even I feel like I am making it all up! I have a dx just like yours Ali. Did they offer you any treatment? I am just curious, my rheumatologist (private and a bit difficult to say the least) said there was no relationship with my monthly cycle and I was imagining it – but I flare up consistently just before menstruation and ovulation. Just curious to what they offered you and if it worked.

  11. I am a 39yr old active female and for about 4yrs have been suffering with random pain and inflamation in different parts of my body around my cycle. I have been tested dor for Lupus, RA, gout several times and nothing. Only a little anemia and thyroid test showed low TSH and normal T4. More test to be done to see what is going on, also recommended by gynecologist to test for fybromyalga. This pain only occurs before and during my cycle may last 2 or 3 days and is debilitating at times. Predisone paks work but no otc pain meds help at all. I have an referral for Rheumatologist but am not hopeful because of the previous test and that its not the joints. It is has affected my jaw, eyes, sides of my wrist, side of my ankle, back of my hand top of my foot and very seldome my shoulder and knee exrays never show anything. All I do is pray for relief soon this is a terrible ailment and I wouldnt wish it on anyone.

    • Same problem. Can’t seem to convince my rheumatologist that my swelling is linked to my cycle. Prednisone eliminates all pain and swelling… I’m not complaining at least I get symptom relief. I just wish I knew what was wrong.

    • Hi Suz.. This sounds very very familiar to me!!
      Usually having strange sharp pains here and there in my body from about 2 days before my period starts, and a day or two into my period and then disappearing again. Pains are sharp and kind of travel..? It’s hard to describe, but I often feel them in feet, ankles, shins/knees, wrist/back of hands and shoulders too! I have no idea what or why and am still trying to figure out what “autoimmune” disorder I have.. Have you had any further insight? Would love to hear about it! I’m just about to see another rheumatologist after not being happy with the last one

    • Hi Mia,

      Keep pushing, see all the consultants, you will eventually get the right diagnosis.
      The locations of your pain sound a lot like the hot-spots for Psoriatic Arthritis (which is linked to psoriasis, but can present before any skin lessions).
      It took 2 years of being followed by a rheumatologist before I was properly diagnosed. And now, knowing what I have, I am much better able to manage the pain and inflamation .
      I also had increased pain and swelling pre-menstrually. The pain was mostly in my lower back, swelling in finders hands and wrists. I have since had a sub-total hysterecomy, so no longer have a menstual cycle to track, but do have a hormonal cycle. Though I am medicated (methotrexate) for the disease, there is still definite increase in symptoms in the period which would have been pre-menstrual. Ibuprofen works for me in these instances.

  12. I am a 32 yr old woman with UC. I always get a mini-flare during my period with abdominal pain and arthritis. Its always a good time. ?
    I use my heating pad and take imodium during that week and eat small bland meals.

  13. I feel terrible right around ovulation and hurt all over real bad, especially back, pelvis and legs. I feel my very best the few days before my period! I have Lyme and Hashimoto’s.

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  22. I always get real bad inflammation in my right foot every time my cycle comes on its the same foot everytime bit in different spots in my foot. The Dr.’s don’t know what it is and I end up taking a lot of high doses of ibuprofen to ease the pain.

  23. I have a rare form of psoriasis, Guatte Psoriasis and i may have psoriatic arthritis I have began to notice two weeks before my period and the week of I can’t move my joints are extremely flared, everyday for three weeks. My neck , lower back , fingers , knees and toes my fingers and knees being the worst it’s a burning aching throbbing swollen pain . I can barely walk. Motrin , Advil , tyenol ect doesn’t work. I’m at loss.

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  34. I’m a 35-year-old female diagnosed with Sjögren’s. I’ve noticed that right around ovulation and a couple days before my period I have various symptoms flares. I have extreme fatigue during ovulation, and then a pretty general flareup right before my period.

  35. I have been having auto immune flares for 32 years even after a hysterectomy. I feel terrible around the time that was my period time. I tell this to doctors and they look at me and role their eyes.

  36. The pattern with my psoriatic arthritis is that the week before my period always feels like a flare–usually in my feet, despite having symptoms in many other joints at other times.

  37. In addition, it continues even though I now take Celebrex daily. The day of my period arthritis pain disappears.

    • Avatar Elizabeth says

      Hi Jennifer —
      This is what happens to me. I have noticed a marked and consistent improvement in my Psoriatic Arthritis symptoms during my period and then in the days following, I am right back to where I stared before with pain and inflammation. Have you ever gotten any feedback from your rheumatologoist about this?

  38. hello I’ve been reading the post and I have been experiencing some of the symptoms that are mentioned . I noticed when I’m due on my period I’m struck down with flu like symptoms I get really tired and my joints hurt . I just recently lost a baby plus still breastfeeding my nearly 2 year old and just got my 1st period back since it happened and I’ve been struck down with pain all over my body even my spine hurts and I’m clicking all over . my heart is racing. I went to the doctor she said I could gave a virus ??? I don’t think so ….. she did a blood test for infection markers, tyriods and Vit D I’m awaiting the results …. will these bloods prove anything or do I need to push for some other test ? I’m really scared .

  39. Yep, same thing as many of you..
    I have had joint pain since I was 19, on and off.. I’m 37 now and am going through another flare after having my first child.
    All of my problems started after a tetanus vaccine.
    I have painful joints during ovulation and before my period comes.
    I used to have this pain every single day until I started natural therapies after finding zero help from doctors and so-called specialist..
    I went into 5 whole years of blissful remission at 30 and had my first child at 34.5 years..while I was feeling the healthiest I’ve felt since before this all started.
    Sadly my pain returned 6 months into motherhood.. I put it down to being tired and a new sleeping position with my baby, but boy I was wrong.. It came back like never before.. Fatigue and depression were all part of the package.. I was diagnosed with fibromyalgia but I’m sure it’s more than that..
    I now can’t fall pregnant, been trying for almost 2 years.. I really need answers, we all do!

    • This sounds so much like what I went through. I just recently got my second set of immune shots and started my period after 2 months of not having it. I have been suffering since last week with back pain, flare ups, shapping stabbing pains. I dont know what to do.

  40. I got high CPK levels and was referred to a rheumatologist, was diagnosed with autoimmune-Myopathy. I’m glad i know what’s happening as i was seeing docs and being tested for years with no answers but this flare with my cycle is driving me crazy!!!! just before the start of my periods like 2 days before and i’m in sooo much pain!

  41. I am in my twenties. Since a year ago, due to long work hours and high stress, I started having rashes/hives/eczema exactly one week before my period. I have done all sort of things ranging from allergy test, to hormonal test to steroid injection to application of many types of creams. None of the dermatologists I have met are able to figure out the issue. I even have side effect from medication overdose and intolerance in a few cases. The acne like eczema only occurs around my stomach area and both of my thighs. It happens consistently every month. It started out only around the stomach area for the first few months and became worse every cycle. Based on my own research online, it seems to be autoimmune progesterone dermatitis. But after seeing that many doctors, I am a little clueless what to do next.

  42. Avatar Vanessa Dejesus says

    I have Lupus SLE and when I’m getting close to my periods my flares automatic kicks in every month is the same for as long as I finish the cycle I have increased swelling of the joints of my hands and legs and severe pain that I can barely get up to go to work 😕 the story of my life for the past 9 years not mentioning other issues that I had over the years

  43. Hi this has been going on for the past five years ,the week I’m gonna get my period I have very uncomfortable symptoms , I
    get a pimple right on the same spot on my hand every month and it starts hurting and becomes a blister . It hurts so bad under my armpits and my boobs and back hurt like crazy . This is every month

  44. Avatar Theresa Osuna says

    Two days before I can’t sleep. And get terrible pain everywhere. It lets me know my cycle is coming

  45. or the past 9 months i am living in hell. from a normal heealthy and busy life style i am subjected to bed. there are tingling twiches and worm sensations followed by wasting of my leg muscles, i do have bilateral radiculopathy but my mother and my mothers sister both died of probable mnd.
    i am 45 year old and have two daughters. my twitches are always there but i get a breathing session during my periods. can any body tell me why i feel like that in periods and what must i be probably suffering from

  46. Avatar Christan says

    I found this article when I googled ‘Sjogren’s symptoms increased during menstration’. I have hypothyroidism and believe I prob have Sjogren’s (based on multiple symptoms) but have not actually been tested/diagnosed. I noticed today that several of my symptoms have seemed worse the last few days and wondered if the fact that i’m About to start my period played a role in that. Thank you for this information! I am a nurse hoping to pursue my Masters. I may have to make this topic one of my researches!

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