Chronic pain and/or illness

kcrocetto27

First off, my apologies, but while I remember a thread for high-risk and mental health- I can't seem to find one for pain and I really hope I'm not creating a duplicate thread here.
I am however, throwing out a life line, hoping some of you Moms might be in a similar boat.
I've had Fibromyalgia/CFS for 9 years now, and I've largely learned how to manage and cope with it. I basically live with some amount of pain every damn day. On a 1-10 scale, most days are between a 3 and a 5. When things get really bad, I can barely walk, this usually happens if I push myself too much physically, i.e. walk around a museum for a couple of hours or stand for too long. 
Anyway, I don't mean to prattle on here, but yesterday DH and I went away to Baltimore for an overnight stay. I had been at a 7 or 8 pain scale wise most of the week and we still went to the aquarium because I had never been. I took frequent breaks and DH tried to take care of me, but I was too prideful to use a wheelchair (because it was very crowded and I don't 'look' sick). We had dinner plans 2 blocks away from the hotel, and I was so swollen from pregnancy and fibro that I couldn't make it, so he went to the restaurant and got take out. Now I'm in the hotel and can barely scuffle to the bathroom. I'm at a 9/10 pain wise.and all I can do is take a bath and some tylenol.
Sorry, this is taking me forever just to say I'm feeling pretty upset and low, and I can't help but to freak out about how I'm going to manage with a baby/kid. I want to live as normal of a life as possible, but it's hard sometimes and I'm just wondering if any June Moms out there are dealing with something similar and can offer any advice?
I am strong, and I'll make it work, but I could use a little encouragement this morning.

mamaelle27

I'm sorry, I don't have any advice, just hugs. Maybe order breakfast in bed and enjoy the comfy hotel bed? Try not to push yourself. Pregnancy is exhausting, even without the extra issues you're battling.

kcrocetto27

@mamaelle27 thank you. I'm dreading the 2 hour car ride home, but after that I don't plan on moving for the day. I just don't know how I'll manage these kinds of days with a baby, but I'm very lucky to have my dh, who I truly could not live without.

Stankonia2014

@kcrocetto27, I have no advice, just hugs. How do you manage your pain when not pregnant? That sounds truly miserable, I'm sorry.

zseirecarg

@kcrocetto27 No advice, but thinking of you. Definitely enjoy the comfy hotel bed.

hopeful808

For me this would be a call to my drs first thing Monday's morning. I do not have a chronic pain condition but, two different conditions one of which Drs are very reluctant to prescribe medication for during pregnancy. What I have learned is you might have to fight to get adequate symptom management. From your post it sounds like  Your managing drs will only allow for nonprescription Tylenol even when your pain is severe? To me it sounds like your medical team i.e. your OB, fibro dr, and yourself need to reconsider what options are best to manage your severe pain flares while you are pregnant and after your give birth.  

kcrocetto27

@Stankonia2014 It's tough even when I'm not pregnant, and it actually hasn't been much worse than usual until this weekend. I honestly get by just by pushing through and resting most days.

@hopeful808 this is actually on me, I've tried a lot of holistic remedies and NSAIDS have caused me some stomach damage/GERD. The only Fibro meds are biologics, and I am simply too scared of the side effects to try them. I usually manage through yoga, meditation, and knowing my limits.

I actually don't even have a rheumatologist right now because I've been to 7 in 9 years. And after hearing my horror stories, my GP has allowed me to solely work through her. She has been great and willing to work with me on alternative drugs, but none have helped and with pregnancy there doesn't seem to be much out there that I can safely use. There isn't much out there for fibro in general. You are right though, I should give the doc a call, my OB hasn't really addressed fibro at all.

I usually put in a tough face, but with the pregnancy, it's getting harder and most people just don't understand.
 
Edit: because typing with one eye shut under hotel bed blanket

hopeful808

@kcrocetto27 with pregnancy I've found that you have to find a specialist that is knowledgeable about treating pregnant women. You could try asking local groups (support, town based) for recommendations. It's hard when there aren't a lot of treatments available and more so when the ones you have tried made things worse. But,for me  at least when my concerns and issues have been discussed with appropriate drs, I feel more at peace and confident with my treatment even if it is the same as what I was doing. 

Peatree26845

Living with chronic pain is awful! It makes you miss out on so much. I see an acupuncturist every week to avoid pain killers. He is a neurologist from China and is amazing. I found him through word of mouth in a very Asian suburb. I've gone to others, but it's worth finding the real deal. I have gone from using meds every day, to taking half a Tylenol only once in a while! Also, I have a family friend that has fibromyalgia. She found an amazing nutritionist, cut out dairy completely and is not hurting anymore. I hope this helps. I know from personal experience that it takes a loooooong time to find what works for you. Good luck! I hope things get better for you!

anitamargarita_82

I can't say I have any advice for your.  I've had chronic back pain for years that's been dealt with through massage and chiropractic care.  I do have psoriasis that comes and goes in waves.  And when it's bad it's really bad and breaks out all over my body.  I haven't been able to use any of the drugs I normally would to control it during this pregnancy.  I just started laser therapy on my scalp for it.   It makes me want to scratch my skin off.  

kcrocetto27

@Wearmi1i have psoriasis on my scalp too, but I've only had one really bad flare with it, I can manage with ointment. I hope your laser therapy helps!

kcrocetto27

@Peatree26845 thank you! Ice tried acupuncture, but it might be worth another chance. Massage actually helps, but is obviously an expensive solution and if I'm really bad, I can barely take getting touched gently, nevermind a massage. Thank you for your encouragement! 

erinh84

I also have fibromyalgia. I was diagnosed 5 years ago. It was really difficult my last pregnancy, especially when the weather took a turn for the worse. I just had to learn how to take a wait and see approach to life and DH is really supportive and has really become my advocate when I'm having pain issues. Anyway, I don't know what your thoughts are on medication to treat chronic pain, but I've been given the ok from my doctor to stay on gabapentin throughout this pregnancy. It's really made a positive difference. Just try not to be to hard on yourself. Taking care of yourself during pregnancy should always be number one. I had to learn that  the hard way last time. Good luck. I hope you can work with your doctor to find a solution that works for you.

krex-2

No advice, just lots of hugs.  

kcrocetto27

@erinh84 thank you! We're you prescribed through your GP or your Rhuemy? I am definitely going to look into it! 

erinh84

@kcrocetto27 my GP this pregnancy. I will actually be looking for a new rhuematologist after this pregnancy, mine wasn't really doing much for me at all. My GP and my obgyn have really worked together to help me with my fibro issues and they both were ok with me staying on medication this time around. I would talk to your doctor ASAP about the issues you've been having. Hopefully you'll find relief soon.

kcrocetto27

@erinh84 thank you! It sounds like it's a pretty decent option, I'm going to call tomorrow!