Autoimmune/invisible illness mamas

liv582 · June 2015

Hi! Just wanted to touch base with you and hear how you are doing with the pregnancy symptoms. I have cfs/fibromyalgia. I initially had a spike in energy, but am rapidly crashing. Anyways, I think it will be helpful to support each other through this because we will face a number of different challenges than other mamas in both carrying our babies as well as raising a newborn.

DizzyMom1 · June 2015

I don't have an autoimmune disorder, but I do have bile reflux disease. I have been so weak the last week from pain getting worse. Every time I tense with excitement for this pregnancy bile comes up and burns my esophagus. I think having 2 pregnancies so close together is making it even worse. I'm plugging at it though and making sure to exercise at least a little bit so I don't become too stagnant this time and wallow. I think being positive helps a lot too so I've liked a bunch of positive Facebook pages, lol.

MississippiCatfish · June 2015

I just want to say I can't imagine having an underlying condition in addition to all of the awful pregnancy symptoms we all complain about it. You guys are amazing!

StasiaBee · June 2015

I have a hyper - immune issue as well as a blood problem. I have to do an immune surpressing infusion every other week, blood thinners 2x daily, and a slew of pills.This is our first pregnancy and keeping all this in control takes weekly monitoring. We are so greatful to God for every moment we have with the little ones growing inside of me.

liv582 · June 2015

DizzyMom1 said:

I don't have an autoimmune disorder, but I do have bile reflux disease. I have been so weak the last week from pain getting worse. Every time I tense with excitement for this pregnancy bile comes up and burns my esophagus. I think having 2 pregnancies so close together is making it even worse. I'm plugging at it though and making sure to exercise at least a little bit so I don't become too stagnant this time and wallow. I think being positive helps a lot too so I've liked a bunch of positive Facebook pages, lol.

I love the positive facebook page idea :-) ... I really like humor pins on Pinterest to get me through rough patches.

candyshaw91 · June 2015

I have the same thing... or similar to. I battle to eat anything that doesn't come back up and it's worse with pregnancy. I have had a chronic and sore throat that looks like strep for 4 months now that turns out to be chemical burns to my throat and pallet. I cant take my chronic meds anymore and the pain is getting worse, but having a little jelly baby on the way is worth it

trish808 · June 2015

That would be me. Low platelets (ITP). Super tired already and pregnancy is making it much worse. Had to quit me previous meds because they were bad for baby now I have to get an infusion one to two times per week, that make me sick, to keep my platelets in a safe range. ITP gets worse in pregnancy so I may have to start taking other meds along with the infusions. Hopefully that won't be until after the first trimester though. This is gonna be a struggle but definitely worth it. Oh and I have a five and six year old that I still have to parent, love, and play with while trying my hardest not to let them know that I reaply just feel like crap all day every day! Pheeww... thanks for letting me get all that out!

hurricane1212 · June 2015

I have dystonia.

ACleanLife24 · June 2015

MCTD, IBS and a host of allergies. I had to drop right off my Seroxat and Amitriptiline when I got my BFP which has been completely messed with my sleep cycle (I finally was getting 8 hours with only 1-2 interruptions). Its starting to get better but not great. My body however is in revolt... my shoulders and back are in pieces and it feels like someone is trying to dislocate my hips. I can't wait for the first appt to see if I can a referral to a physio/acupuncture to deal.

Rheumy has kept me on 2 doses of Plaquinel a day which does seem to work so I am hoping I am a lucky one where the baby tells the immune system to chill out. In the last 6 months I have had to do 6 courses of steroids and trialled methotrexate and blew up like a balloon... I don't need to add additional weight on top of a baby thank you very much!

Honestly I can't tell the pregnancy symptoms form the autoimmune or coming off meds... I am dizzy, nauseous, achey, have "fifty shades of brown" and exhausted with a horrible sleep pattern.... seems par for the course

krabs · June 2015

My doctors can't agree on if I have Sjogrens or Fibro unfortunately. I have my first baby doctor appt July 7 so going to tell them about both and see what they say. With Sjogrens, you're automatically a high risk pregnancy. Not really sure what to expect... However, my physical joint pain has been surprisingly better since getting pregnant..

Knottie24638271 · June 2015

Hi, I have multiple sclerosis and can't seem to get over the extreme exhaustion. I have even been too tired and or too nauseous to work last week. Does anyone have any tips to get through this without just sleeping 24/7?

elsantia · June 2015

Hi, I have Rheumatoid Arthritis (RA) so I definitely feel your pain (and fatigue). I'm 8 weeks 1 day, and finally this week I've been feeling a little better, not sure about Fibro/CFS but RA can go into remission during pregnancy, so I'm hoping that's what's happening...If things don't improve I may have to discuss safe meds to use during pregnancy, just hoping my body can give me a break on this one! I'm all for supporting each other, sometimes it's hard to find other mamas to be who are also dealing with Autoimmune issues.

liv582 · June 2015

Can't tell the difference between pregnancy symptoms and illness - I totally relate to that! I am exhausted, but seriously that is kind of my life. Note on pain - My back has been killing me, so I went to a chiropractor yesterday who specializes in pregnancy. It was awesome and I recommend it! Thank you all for posting ... It is always nice to hear that others get the struggle

lecrumpler · June 2015

I have autoimmune thyroid issues, an unidentified inflammatory issue, chronic migraine, and asthma. My crp has come closer to normal since I've been pregnant and my headache has improved, too. However, two flights of stairs up to our apartment after work everyday take my breath away, literally...and I'm only 7 weeks. Kinda makes me nervous about a few months from now when I'm actually carrying around more weight.

liv582 · June 2015

Knottie24638271 said:

Hi, I have multiple sclerosis and can't seem to get over the extreme exhaustion. I have even been too tired and or too nauseous to work last week. Does anyone have any tips to get through this without just sleeping 24/7?

Have you ever meditated? I found doing ten minutes really helps my fatigue. I usually close my office door and lay on the floor to work it into my schedule. You can feel very refreshed after.

wagvan · June 2015

I have Complex Regional Pain Syndrome which is an autoimmune pain disorder (they think...they still aren't entirely sure what causes it or how to treat it. It has similarities to phantom limb syndrome where amputees have pain in their missing limb. Basically the pain switches in my nervous system switched on and didn't switch off when my broken and dislocated ankle healed.) I have been on Neurontin and Oxycontin since I was diagnosed and that brought my pain down to a dull roar. So once I got pregnant (unplanned) I have been weaning off of my meds, because niether is okay for pregnancy. I have been weaned off of the neurontin for a couple weeks, and today is my first day completely Oxy-free which is AMAZING! Go me! I still have pain, but it is the same as my pain on my meds, which is amazing since we keep having storms which ordinarily makes my CRPS flare, even on meds. I'm assuming it is a side effect of the pregnancy, because I have heard that CRPS and most autoimmune disorders go into remission with pregnancy. And I am hoping and praying for that. But even with gradual weaning, withdrawal has been rough. It has felt like bugs crawling on my and muscle cramps and spasms sort of like charley horses. But that is mostly gone. But, yeah, I have been resting and sleeping a lot. Not sure if its pregnancy or withdrawal.

iamjustj · June 2015

Ankylosing spondylitis. I'm having a bit of a rough go. Ive stopped everything except Lyrica every few days when I can't deal.

wagvan · June 2015

Is Lyrica okay? I know for me, they were most concerned about my neurontin and got me off of it asap. And I think Lyrica and neurontin are a similar drug because they tried Lyrica for me. I'm sorry you are having a rough time. I have a Voltaren gel that is topical that I take that is supposed to be a lot safer, perhaps something like that might help you cope with your pain better. It surprisingly works pretty well, though you have to reapply throughout the day. Not sure how hard or easy that might be for you. I know my DH takes oral Voltaren for his arthritis. I'm not a Dr, nor do I play one one TV.

But I know for my CRPS, a lot of us have done much better comparing notes with others on the web, and asking our doc about it. Sometimes the doc says "no, and this is why..." and sometimes the doc thinks it is brilliant or is willing to try it and see and it helps a lot.

iamjustj · June 2015

There are definitely some risks with Lyrica, but it's a class c. I want to start physical therapy soon and hope that will take the edge of a bit. I've stopped humira, tizanidine, zohydro and tramadol.

isgro2014 · June 2015

I have Lupus and this is our second pregnancy. Pregnancy tends to keep Lupus in remission, but my last pregnancy my son was diagnosed with IUGR and said to stop growing at 32 weeks. He came out a healthy 6 pounds, what a relief! I had some kidney issues towards the end, but most part healthy pregnancy. Best wishes to all!!!

SnurtleJB · June 2015

I have chronic ulcerative colitis in the end of my colon... I'm super bloated bc the hormones make it worse with a non stop flare up. I'm stuck with daily anti inflammatory enemas until I deliver. It's wearing me down, not to mention hydration is a hard task (downing so much Gatorade). All I want is dairy and milkshakes which I can't have

liv582 · July 2015

Just want to check in see how you all are doing! I just upped my meds because I was turning into a freezing cold mess!

wagvan · July 2015

I'm in day 5 of withdrawal from my oxycontin. I'm doing better but the 2nd and 3rd day were brutal. Muscle cramps and spasms to beat the band. I'm am doing horrible at eating gluten free. I need to get back on my gf diet.

mckile33 · July 2015

I have ankylosising spondylitis too. I stayed on Humira and am doing relatively well. My symptoms were well controlled before pregnancy and Humira is category B so I stayed on it. I'd encourage any one on similar meds to enroll in the Mother to Baby studies so that future moms might be able to take these meds with good research backing them up!

PedsIsHardcore · July 2015

I will join you ladies. I have PCOS, Type 1 Diabetes, GERD, and other crap. Right now I have high white blood cell count (borderline high) and low platelet count. Because if I'm not super high risk then its not legit. Buh!

jjdale288 · July 2015

I was diagnosed with epilepsy when I was 15. I haven't had a seizure in 9 years but am still on a med. My trileptal is a category C but I am on an additional 4 mg of folic acid.

DizzyMom1 · July 2015

My pain is worse, probably due to my anxiety and I am worried about whether I may be getting another ulcer, serious bummer. My OB wants me on anti anxiety meds to deal with my anxiety about the pain and two pregnancies so close together, but I am too anxious to take the meds

Oh well, c'est la vie.

I definitely want to give a shout out to the ladies having to wean off of meds right now, that's some powerful stuff! Go Mamas go!!

ktob3 · July 2015

I'm glad there's a board for this! I have lupus, sjogrens, scleroderma and some heart issues. So far everything except my heart has quieted down (and the heart is manageable). I'm only 6 weeks so I hope it stays this way! I haven't felt this good in years! (minus the fatigue and horrendous nausea). If anyone else has had autoimmune problems during a previous pregnancy, when did you start flaring?

liv582 · July 2015

I second that question - when did the flares start? I felt awesome initially, but everything went into decline once I started getting nauseous last week. Now I can hardly life my head and I am freeeeezing!!!

liv582 · July 2015

wagvan said:

I'm in day 5 of withdrawal from my oxycontin. I'm doing better but the 2nd and 3rd day were brutal. Muscle cramps and spasms to beat the band. I'm am doing horrible at eating gluten free. I need to get back on my gf diet.

I have to eat gluten free at a bare minimum, but all my other dietary restructions have been thrown out. I can only handle grains right now, which I haven't eaten in years. ugh. I cannot wait to be able to eat better!

liv582 · July 2015

Oh and P.S. - you all are awesome!

isgro2014 · July 2015

liv582 said:
I second that question - when did the flares start? I felt awesome initially, but everything went into decline once I started getting nauseous last week. Now I can hardly life my head and I am freeeeezing!!!

With my Lupus, technically it was in remission while pregnant. I didn't have any of my normal flare symptoms, and blood work looked great. However, they diagnosed him as IUGR at 37 weeks, which lupus is known for smaller or IUGR babies. Around 36 weeks I was put on bed rest for kidney function. The lupus has never affected my kidneys before, so they did not correlate it to a flare. I ended up doing six 24 hour urine every couple days and my protein level kept increasing. Once they diagnosed him as IUGR, they set up a date to be induced. He was healthy as can be, thank heavens!

My advice to everyone, (and I have to remember this myself) is that you are your biggest advocate!! When you have an autoimmune disease, you tend to know your body really well. Listen to it, and if you feel something is really wrong, don't stop pushing for answers. You know your body, speak up if you feel like a nurse or doctor is belittling your fears. We will get through this together bumpies!!

PedsIsHardcore · July 2015

Are you ladies seeing maternal fetal medicine docs aka perinatologists? And how many appointments are you all having right now? All my specialists want to see me every 2 weeks and I'm not thrilled with that. I'm a pediatric nurse and I work 2nd shift. They are doing extra testing on me. I had to have an echo cardiogram and I have to see an opthalmologist and just am over it all already. I didn't have this many appointments when pregnant with my DD.

wagvan · July 2015

Day 13 of withdrawal and I think the worst is past. But man I have the worst insomnia right now!

ladybutler · July 2015

I'm also tapering off Norco right now. I'm doing ok but I know the worst is yet to come. I already stopped my Cymbalta and my anxiety is so high with hormones and tapering. This is my 4th baby and I am high risk due to preterm labor and short cervix

elsantia · July 2015

I had to get a cortisone shot in my right knee (which is always the first joint to swell when I'm nearing a flair) and am now on low dose prednisone (5mg/day). I wanted to be med free for my pregnancy, but the way I see it is that it can't be great for baby while my immune system is going crazy on me and making me miserable. I want to be able to enjoy my pregnancy, and I'm glad that I caught the flare when I did, so hopefully the prednisone will be all I'm taking throughout.

CompProf · July 2015

Fibromyalgia, hypothyroidism, and atypical/nonreactive hypoglycemia (though no problems there recently) all I take is my thyroid pill now. . . I can get pretty hostile if in pain for a while, but mostly I've just been amazed at how tough I actually am.

aoneill11 · July 2015

I have an autoimmune thyroid disease called hashimotos. This is my first pregnancy and I am 9 weeks 1 day. I feel exhausted all the time but hopefully that will let up in the 2nd trimester. I recently swung to the hyper side before getting pregnant. My endo made me switch from ndt armour meds to synthetic levothroxine.

JLaszlo00 · July 2015

I have Celiac among other dietary restrictions and health issues. The one good thing about Celiac while pregnant is that I can't eat spontaneously outside the house ha ha... Hopefully that will help not gain a ridiculous amount of weight.

Kweyer · July 2015

I have Chrons disease/autoimmune disorder. Trying to get through this pregnancy without meds. So far, going better than my last one, but it's definitely a double whammy having a chronic illness and being pregnant.