Tuesday, July 01, 2008

Sjogren's Syndrome and Fibromyalgia

I recently received a request for more information on how Sjogren's Syndrome and Fibromyalgia may affect pregnancy and birth. Please comment or pass on links if you can help out. I'm especially interested to hear from those who have either deal with these personally, or assisted pregnant or birthing women with these conditions.

UC & general natural childbirth (i.e. w/ a midwife either at home or in a
birthing center) seem to be geared more towards very healthy, low-risk
pregnancies. What about those of us who no matter what we do are
automatically classified as high-risk? I am 25, and have two autoimmune
diseases: Sjogren's Syndrome (attacks moisture producing glands in body), and
Fibromyalgia. Both are mostly under control with medication, mild
exercise, and massage therapy, and my husband and I have begun to think about
children. Sjogren's Syndrome is known to cause fetal heart blocks and,
like any other autoimmune disorder, you can either have a disease-symptom-free
pregnancy or one that will literally knock you flat on your back for nine months
because you are in so much pain. This scares me, yes, but I have felt so
out of control of my body for the last eight years that I want to see what it is
really capable of and welcome pregnancy & labor-- reclaiming myself, if you

Unfortunately, if I become pregnant, I am automatically classified as "High
Risk" and most midwives probably will not want to work with me due to
this. I fear that I will not be allowed to have the kind of birth and
pregnancy I am hoping for, both as natural as possible, with the labor &
delivery in a birthing center.

Do you know of any resources for having a natural pregnancy & delivery
when you are a "High Risk" individual? I do not want to put our children
in any jeopardy of course, but I also do not want unnecessary medicines &


  1. I'm curious about this as well. My MIL was diagnosed with Sjogren's and Lupus recently (in the last few years). They told her she's probably had both for many years, undiagnosed. I'd be curious to see if any of the things I know about her pregnancies were related.

  2. If it were me, I would see if there are any natural childbirth type groups in my area, doulas/midwives etc. (In my neck of the woods there's a yahoo "birth network" which is a fantastic resource for finding doctors/midwives etc.) Ask for recommendations for natural childbirth friendly docs (they are rare but do exist). I'm thinking it's doubtful you'd find a midwife that would be willing to take you as a patient, but you never know, you may get lucky. And then start interviewing them. Also know what your medical rights are and find someone that will let YOU make the decisions. What a tough spot to be in. Good luck!

  3. I have fibromyalgia but not sjogren's. I gave birth to a healthy baby and was medication free during the pregnancy (I will need medication if I become pregnant again however). I can post more later. If you want to pass on my email it is sarahnovas@yahoo.com.

  4. I live with MS, Ulcerative Colitis and a previous diagnosis of Fibromyalgia. I am 52 yrs. young and currently studying to become a Childbirth Educator. I hope to specialize in couples living with disabilities and chronic illness. I will be keeping an eye on the reponses to this thread!

    Let me share, as one living with multiple autoimmune disorders myself, about a little known drug treatment that has literally given me my life back. It is known as LDN and it is an abbreviation for "Low Dose Naltrexone". Less than 2 yrs. ago I was using a cane, had extreme debilitating fatigue, and legs that felt like walking through mud. I live with none of those symptoms now. My U.C. is in complete remission as well. LDN is cheap and seems to be effective in treating a wide range of autoimmune disorders including HIV/AIDS, MS, Fibromyalgia and even autism in children. It may help lessen your symptoms during pregnancy. I would feel comfortable taking it during pregnancy - yet, you would have to research this for yourself. check out:


    for the latest research news and testimonies conerning this very viable treatment option that more need to know about! I get my script filled through Skip's Pharmacy - Boca Raton, Fl., U.S. (A compounding pharmacy that specializes in dispensing this drug.)The challenge can be finding a doc to write the script.

    I agree with Paula - research docs in your area who are for unmedicated births - and empower yourself with knowledge concerning how to have a gentle birth in less than ideal settings. If you need - seek out wise and loving perinatal counsel to work through your fears both during pregnancy and before birth. Blessings to you!

  5. I think it's important to separate pregnancy from birth. While there are some medical/health issues that make for a high risk pregnancy, often the birth itself is not high risk (particularly if prenatal care has been good). I was considered high risk, although lower-high risk, and although it did create some issues with prenatal care, my deliveries were totally non-risky.
    So, perhaps care with a midwife AND an OB would work out in this case?

  6. First, where do you live? IF you live in my neck of the woods I can refer you to a Dr. with a more natural approach.

  7. First I'd say, don't give up on a homebirth yet. We have a woman who is part of our local ICAN chapter. She has fibro (severe enough she must walk with a cane) and a clotting disorder (I don't remember the name). The clotting disorder has never been clinically relevant but it is there in her records. She'd had 2 previous c/s and really really really didn't want another one. Now admittedly, my area has a large number of midwives to choose from and the climate isn't as hostile as it might be, but long story short, she just had a beautiful HBA2C and does not have to deal with surgical recovery on top of her underlying medical issues. It is very true that there's a difference between risks in pregnancy and risk during the actual birth. Before you assume that everyone will say no, make sure you ask :-) My friend was sure there was no hope for vaginal birth, much less a homebirth and she was happily wrong about that.

  8. I have fibromyalgia and was still considered "low risk" during my pregnancy. We planned a home birth with a CPM and I felt great during my pregnancy. The research I did about fibromyalgia and pregnancy was conflicting. The medically-accepted studies indicated that symptoms worsened during pregnancy, while anecdotal evidence reported by rheumatologists indicated their patients experienced a reprieve of symptoms. I fell in the latter category. I felt better during my pregnancy than I had felt in years. Truly amazing. The downside came at about 4 weeks postpartum when my symptoms returned with a vengeance. My joints were so stiff they would lock up just in the time it took to nurse my daugther. I had great difficulty navigating the stairs at our home and was truly unsafe to carry our daughter while going up or down the stairs. This lasted for more than a month. My symptoms gradually returned to their baseline, but it took many months. Hope some of this helps...

    - Audrey

  9. I am the person who sent this email to Rixa, and I live in Los Angeles, CA near Venice so any resources are definitely appreciated! I can't tell all of you how nice it was to read all these positive, supportive comments. My email is janetmcowan@hotmail.com

  10. I have fibromyalgia and pregnancy saved my life. I wasted away for years with fibromyalgia, on pain meds, unemployed, depressed as a result. When I got pregnant with my child I vowed to change my life. I started doing prenatal yoga once a week and began seeing my body as a sorce of strength and power rather than pain and suffering. My pregnancy was very difficult, I gained a ton of weight due to preeclampsia which was tough on my joints. I had constant muscle pain in my abdomen from the strain of my enormous belly. I had to have an emergency c-section due to my vitals crashing and my child not decending into my pelvis. Through breastfeeding (extended, nursed 2.5 years) and weekly postnatal yoga I am in the best health of my life. I no longer see myself as someone with an illness. My body doesn't hurt and I have no time to dwell on small aches and pains. My child has given me a new life with so much joy and daily challenges to work through and I am so grateful for him and this once enemy body.

  11. One particular thing that makes Sjogren's high risk for both miscarriages and for birth defects can be fairly easily prevented in most cases. They've discovered that women with Sjogren's usually have larger particles in the amniotic fluid than are found in that of healthy women. The problem that arises=the fetus will oftentimes miscarry from suffocating on the particles. Thankfully, though, when this risk is present, depending on other risk factors, blood thinners such as heparin and lovenox injected into the stomach during pregnancy... they thin the amniotic fluid as well, almost reversing this particular (high) risk... I wouldn't say that a home birth is at all impossible, but anyone with Sjogren's should be followed by (preferably a researching university) hospital rheumatology staff, along with a somewhat aggressive gynecologist who will be frequent in follow-ups and blood work, along with ultrasounds and eating a lot of nutrient rich foods, avoiding caffeine and cheese, etc. a bit more religiously than healthy people can get away with.

    Incidentally, I've known people with Sjogren's who have miscarried and people who have had children who have turned out healthy... in recent years, the only healthy babies (no C-sections, cutting off of air in kids, etc) from Sjogren's patients I've been hearing of have indeed been given blood thinners in the critical months of development. I'd say it's well worth it given the research that shows it is helpful. Then again, adoption is also an important option to consider for anyone high-risk... it is still usually less expensive than birth and the risk factors are generally more known. Having AI disorders can make the process of pregnancy a very distressing one to the body, moreso than normal that is. It's certainly not something to just jump into without considering the alternatives.

    One other risk for Sjogren's patients and other autoimmune patients is a higher risk of gestational diabetes, and incidentally, gestational diabetes has been linked to a higher % of babies who develop autoimmune conditions later on, regardless of the mother having active AI conditions or not... so that's a bit of a double whammy effect. They don't know why that's true yet, but they've studied it over 30 years now.

  12. How you investigated the possibly of you having Celiac disease or gluten intolerance. Celiac can mimic fibro symptoms and is very often connected to Sjogren's. I have Celiac and Sjogren's. Many of my symptoms were similar to fibro and once I tried the gluten free diet I felt amazingly better in a short period of time. Look into it!

  13. I have Sjogren's Syndrome and Lupus and just delivered a healthy baby girl last week. My milk is not coming in and I wonder if anyone has information about breastfeading with Sjogren's. Please Help!

  14. I know that this is an old post - but when I was researching on fibromyalgia and pregnancy it was some of the most useful and relevant information I could find. I thought if I put my experience here perhaps it might help someone else.

    I was diagnosed with fibro about 2 years ago after several frustrating years of doctors and tests. When I got married last year, we wanted to have children, and I was curious what my condition would mean during pregnancy and childbirth. It is VERY difficult to find any information on this subject! I wanted a natural childbirth, not a medicated one and for sure not surgery, because I knew what those procedures would do to my body! But I didn't want to be stupid and attempt something impossible, knowing my hyper-sensitivity to any kind of stimulation and my body's tendency to interpret any sensation as painful. The comments under this post were very encouraging to me, and I went ahead with a midwife-assisted homebirth.

    We ended up laboring and ultimately birthing in the birth pool, which I would definitely recommend for anyone with physical challenges. I had a relatively quick labor (6 hours from water breaking to birth) and it would have been much more intense without the relaxing influence of the water.

    I would not say it was easy - although the midwives thought it was - and comparatively, I suppose they are right. It did hurt, sometimes about as much as I could handle, and the pain was about on par with my worst fibro/nerve pain, but the intensity of the pressure made it more difficult to handle. However, our son was born with no complications and at this moment is happily nursing in my arms.

    If I were to guess what effect my fibro had on the delivery, I would say that it was mostly two things - first, the pain did not go completely away between contractions, as it does for some women, and second, I was so sore a few days afterward that I could hardly move. Every muscle in my body was stiff. But that is how my body responds to any mild exertion, so I was not surprised. :)

    Incidentally, I felt very good during a large portion of my pregnancy. The last two weeks were tough, and I did have morning sickness at the beginning, but I would have to add myself to the ranks of the "I felt better during pregnancy" ladies.

    I hope this experience can be helpful to someone else out there.

  15. I am 36yrs old and have fibro for 16+ yrs. I am just entering my 2nd trimester with my first pregnancy and have made a decision that homebirth would be the best option for me. I am lucky to find a midwife who does not view fibro as a high risk per say. My fibro symptoms have been worse since the pregnancy and probably will get much worse in the third trimester... So far it is still manageable though. I 've been struggling to find any info on the effect of fibro on pregnancy and childbirth, so I will post at the end of my pregnancy again to share my experiences with other women.

  16. Well, here is my update, more than a year from the first post ( I am the one who posted 10/5/09).
    After 68hrs+ back pain labor, I was pushed by the doctors to have an epidural (they were thinking I could not progress because I could not relax), which stopped my labor completely... and had to get pitocin. Miraciously, that did not end up with a C-section.
    The conclusion for me - yes, natural childbirth is doable with fibro, it is not too bad even when it hurts like hell, because you know it is only temporarily and you are bringing a baby into the world... 6 month postpartum - major flare.... Hope it will go away at some point. I want to have another child but don't know where to get the strength for it.

  17. While this post is old--my own comment the Sjogren's related one about amniotic fluid etc--it is a critical
    distinction to make:

    Fibromyalgia is NEUROMUSCULAR.

    Sjogren's is AUTOIMMUNE.

    There was immense confusion for two plus decades before the fabulous world of advanced diagnostic testing was
    applied to fibromyalgia in particular--remember it being called a "depressive" or "anxiety" disease in the 90s and by some even still? That wasn't "entirely" off base. The autoimmune notion... Not a bad guess, either, as it is like "arthritis for your muscle tissues/nerve cell."

    So now we know just WHY things like Savella are fabulous for it--they treat the NEURORECEPTOR DEFICIENCIES that pregnancy can, in fibromyalgia, both help and harm--all depends on how hormones play into your neurological processing "faulty wiring/insufficient flow of seratonin/norepinephrine/a bit on dopamine)...

    So fibromyalgia is no longer considered any more "high risk" apart from PAIN and nerve signals possibly going even more off (pain and pleasure are two tiny steps from each other; the pleasure nerves can--trauma particularly causes it but prolonged stress like pregnancy can, too--completely convert to pain responses. Soft kittens can feel like bales of harsh hideous hay stroked against the grain. That is entirely neurological. That same reaction can-in some pregnancies--be subdued... If the hormonal changes happen to increase the amounts of norepinephrine in particular and seratonin by a lesser bit (only 5-10% of fibromyalgia patients have this fortune), pregnancy can be an oasis to the FM desert. For about 60%, pregnancy=more flares, worse pain, hardship, risk of distress on the infant in the third trimester especially (so C-sections sometimes become necessary because the heart rate can NOT exceed certain limits without causing permanent damage or even mortality :/)... Still, the other 30-35% have little or no change in FM symptoms...

    It is NEUROMUSCULAR versus musculoskeletal which autoimmune diseases are.

    Be GRATEFUL it is Fibro and not Sjogren's... They do often go along--as depression with nerve pain is treated the exact way fibromyalgia is (including the kinds of biofeedback that help)... And they ALL put us at greater risk of neurotransmitter imbalances, deficiencies via excessive reuptake in most cases... Sjogren's can cause fibromyalgia/depression/other *neuro*muscular ailments; diabetes often does, too--the brain is rarely immune to change when something it ultimately controls stops working... But fibromyalgia hasn't been shown to cause autoimmune responses, though sometimes AI conditions are misdiagnosed--Fibro is horribly misunderstood.

    I hope this is useful to someone; I get updates on literally every single post related to my research specialties and areas of treatment expertise to stay informed and connected as face it, I will never meet as many patients as I read the stories and questions and posts of!

    Good luck to everyone! Fibro sufferers be glad for your ability to usually--unless *other* conditions (sometimes unknown til long into or even after pregnancy!) are putting you at significant risk... Your brain can be handled as long as you stay calm and focus on what the baby needs--no evidence AT ALL suggests that circumstantial stress (Holocaust pregnancies and 9/11 babies are great examples) impairs infant health or longevity--the holocaust babies actually lived significantly longer on average and had above average health! Your illness will impact your child in as much as you allow it and *other* factors--non-neural--stress you.

    Who would think to be grateful it is Fibro or even "all in your head" (even autoimmune disease starts with very stupid white blood cells dictated by a misinformed brain--it is mostly all in everyone's head!)? Good luck, all!

  18. I just wanted to say that fibromyalgia is NOT definitively not auto-immune. We do not know enough about the disease to conclusively determine that it's not auto-immune. Fibromyalgia seems to be more of a grouping of widely varying symptoms (and not just muscular pain and fatigue), some of which appear auto-immune and some of which do not. The symptomatology and onset of fibromyalgia is so varying, it's likely there is more than one condition or illness that is being collectively labeled as fibromyalgia. As so many doctors have told me, "we just don't know until there is better research and testing available".

    Anyhow, I really appreciate this discussion and have found it really helpful to read the experiences of others as I consider having a baby. I just felt the need to advocate for those of us with fibromyalgia who seem to have more of an aut-immune-type illness that mystifies doctors.

  19. This is an old post, BUT I have sjogren's. It was undiagnosed until after my third pregnancy. Though I did have a couple very early (6 weeks) miscarriages, I want everyone to know I had three very health babies. I felt horrible during the pregnancies, but the babes are great. Don't get scared from reading only horror stories. Things may be just fine.

  20. My first 4 kids were born healthy although the 3rd had growth restriction. Sadly, my 4th child was stillborn at 32 weeks due to a heart block after a flare up after I was sick. I wish I had known this was a possibility. I missy daughter so very much.


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