NeuroTalk Support Groups - Pregnancy Update

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Pregnancy Update (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/205253-pregnancy-update.html)

Hi Catra,
I'm so glad your pregnancy is going well. I am also impressed that you are going through a pregnancy with CRPS.
I have been doing IVF for 4 years and only recently developed my multi location body pain in the last several months (not sure if it is CRPS).
May I ask: are you on any medications while pregnant? If not, how do you cope?

Dear Catra ,
I'm so glad your infection got under control and everything is going well, nothing make me more happy to know you and the baby are ok,our niece !!!!!
Gentle loving caring hugs with love Jesika .:grouphug:

Quote:

Originally Posted by JK123 (Post 1094678)

Sorry that I didn't see your post until just now...I was out of town in Disney World with my mom and aunt for the week.

I am not on any medications while pregnant...but I wasn't really on any prior to the pregnancy either. I had a very early miscarriage last year...and that's when I stopped using clonidine patches...and then when I found out I was pregnant this time I stopped using Lidoderm patches and cream. Other than those though I was off all other medications for over a year...more like two years I think. I have found that medications (and I tried a LOT of different ones) didn't help my pain enough to be worth all the side effects I was experiencing so I decided to stop them all. I've found lots of alternative ways to control symptoms, manage the pain, etc...none of which help a LOT...but they all add up to keeping me at a pain level where I can function. The Lidoderm patches and creams were only used as needed for either severe flare ups or if I was planning on doing something that I thought COULD trigger a flare up and were used as a preventative (sort of) to keep the pain from escalating too high.

When I have a bad pain flare up I have the following protocol that I use (ASAP...because the longer the flare up is going on the harder it is to get under control):

1. Hot/Warm bath with Epsom salts

2. Ultrasound heat therapy treatments on the areas where the pain is worst (bought unit on amazon.com)

3. tDCS treatment (once a day until flare up is under control and alternating sides for treatment since I have RSD on both sides of my body)

4. TENS unit treatments on the worst areas for at least one hour each

5. Heating patches (thermacare or generic brand) on the worst areas

I like to do the tDCS treatments after the bath and ultrasound treatments and before the TENS unit treatments because I am still relaxed from the bath (as much as you can be in a bad flare up anyway) and the treatments take 20 minutes and are performed in a dark, quiet room in my house with no other distractions. If you don't do these treatments then it's an easy step to skip in the process...it doesn't have any immediate effects on the flare ups that I can see...but the treatments do seem to extend the period of relief and my flare ups go away much faster than they used to prior to tDCS treatments.

I usually rest up the first day/night during a flare up but the next day I make myself start moving again. If I'm not up to anything big then I do some very basic stretching exercises that I learned in physical therapy. I make myself move but it's important during a bad pain flare up to not push too hard or it will make the flare up worse.

On a day to day basis for the pain...I take hot baths with Epsom salts every day at least once a day...more if I'm having a bad pain day that's no necessarily a bad flare up...just elevated pain levels for whatever reason. I also have a relaxing playlist on my iPod of instrumental music that helps me relax and calm down...which helps with the pain because stress is one of the biggest triggers for pain.

I avoid triggers as much as possible and this has been a HUGE key to keeping me functioning. I know my limits and have spent years finding ways to do things that minimize flare ups and that don't aggravate my pain. It is not an easy process...trying to figure out what your triggers are and then working out ways around them...but it is SO worth it because it keeps me functioning.

And...I make myself just keep going...every day. I have a bad day now and then where I take it easy...but these are definitely the exception rather than the rule...talking maybe one day a month if that. Even on these days I keep moving...I just rest a lot more and avoid anything that will trigger more pain or that's physically draining. It's hard sometimes to make myself get up in the mornings, go to work, do what needs to get done...but I just remind myself of how miserable I was when I was wheelchair bound and that gets my little behind in gear and moving.

I also have a great support system and most importantly a boyfriend who loves me. It makes everything a lot easier to deal with. My boyfriend helps and supports me...but he doesn't make me feel broken...if you know what I mean? I feel like I can do anything...but when I can't he does things for me to help me out without my having to ask...or if I do need to ask there's no argument or resentment from him. He never makes me feel like I'm a burden. These days I really don't need him to do much...I'm very self reliant (and stubborn) so I can get things done on my own...it's only on bad days that I have him help me out with anything.

Hope some of that helps...if you have any more specific questions let me know.

Being with family is the best way we can feel safe and sure we are in the right hands ,love makes the world a better place.
You and your baby girl are surrounded by loving caring people,even the eons you don't even know but we do care ,:grouphug:
Loving hugs and best wishes ,Jesika .

Just wanted to pop in for another update as I realize I didn't post an update since seeing the high risk specialist on Tuesday.

The appointment went VERY well...this doctor was extremely professional and competent and really put my mind at ease. Her recommendation with the RSD is to have my regular OB order a consult for me with anesthesiology at the hospital I am going to deliver at to ensure they know what I want/need with regards to treatment and protocols if I have to have a C-Section and even with a regular vaginal birth. She said it's much better to have that consult ASAP rather than relying on my doctors to communicate that when I am in labor or even trying to communicate it to them myself at the time. She also recommended having a copy of the birthing plan with me when I go to the hospital just to make sure they have everything. I felt much better after the visit but will feel much better now after the consult with anesthesiology. The time feels like it is flying by so fast...want to make sure I get all this buttoned up ASAP.

With regards to the baby herself...as always the doctors say SHE is perfect. She was 3lbs 13oz on Tuesday when they measured her and they said that IF they went by her size now they would guess my due date will be closer to November 12th rather than November 28th. That's actually more in line with what I was originally thinking...but the OB moved the date back after my first ultrasound.

In the end...she's going to come whenever she comes...but I am guessing it will be earlier than the 28th. Of course that puts even more pressure on getting the room ready, getting everything squared away with the doctors, going to all those birthing classes at the hospital, etc. The next month is going to be SO busy...

I am feeling very well lately though...just very tired. My trip to Disney World went very well except that my feet and ankles swelled up pretty bad every day. Since returning home they are back to normal...so nothing to worry about there. My RSD pain has been pretty normal...no bad flare ups or anything in the past week or so...except for my hands which have been burning a little more than normal. The weather is changing though and getting colder...so I just have to be on guard and prepared for that.

Hope everyone else is doing well. My next doctor's appointment is September 29th...very much looking forward to that one since my boyfriend will be there and get to see the baby on the ultrasound again. I wish he could see all the ultrasounds...but with our work schedules it is very hard to coordinate my appointments on days we have off together.

catra - I am so happy that everything is progressing well for you and baby. So awesome!!

Nanc
:hug:

Glad to hear the appointment with the specialist went well!

I remember how busy the end of my sisters pregnancy was...especially after her shower. I don't think I've put together so many things at once ever...lol

Just wanted to post another update.

The pregnancy is still going well...but these last few weeks have been a real struggle for me. September 30th I strained a muscle in my shoulder/back at work...the scapula I think the doctor said...and I've been in agony since then. At first I thought it was just sore...then I thought it was a flare up but nothing that helps my RSD helped this pain and it was AGONY. Finally went to the doctor the following Monday and they said it was a strain/tear...but no way to now how serious it is because we can't do xrays or MRIs.

They took me off work for a week and told me to follow up with the orthopedic doctor on Friday. Well...the shoulder just got worse. I thought it was getting better after a couple of days of rest but then I went to my childbirth education class at the hospital on Thursday night and just from sitting in a chair (I didn't do any of the hands on activities) the pain got so bad I thought I was going to pass out or throw up...I was so nauseous from the pain.

So the orthopedic doctor on Friday said I need to be off work for a month and do physical therapy twice a week for four weeks...once work comp approves it anyway. I'm very frustrated to be off work so long because there was so much I wanted to do before going on maternity leave...but this shoulder strain/tear is really putting me out of commission. The only thing that help the pain consistently is when I sit on the couch with my back completely against the cushions or lay down with my back completely against the pillows. I wish there was a compression brace or something I could use but the doctor said that because of WHERE the muscle is...there's not much that can be done for it to immobilize it or provide compression. So...it's all about resting it.

This month is going to be so boring...but I have to be good and let it heal up so that I can take care of the baby when she comes. Hopefully in a month it will be better and I can go back to work for a week or two before the baby comes to help out with whatever they need at that point. The timing of this just stinks.

My RSD HAS been flaring up a little...likely due to the stress that I'm going through physically right now. I'm essentially forced to "rest" for a month but I've been trying not to immobilize anything too much...but my left ankle especially and even my arms are seeing an increase in RSD pain. Hot baths and Epsom salts help...and I've been trying to do some light stretching when I can't move around much...but the RSD pain is definitely worse than usual. Not severe flare up bad...but just elevated pain. If it weren't for the shoulder strain though...I don't think any of this would be an issue.

So that's where I'm at right now. Baby is great...her mother is a wreck...but as long as baby is healthy that's really all that matters. I'm going to follow doctor's orders and rest up so this shoulder heals...and then everything will be fine.

You look great!!

Glad baby is doing well. Sorry about your shoulder! That sucks, but just try and rest. I know easier said than done! I've been on a new medication daily for my migraines and it is making me more exhausted than I usually am. It is driving me crazy just sleeping and laying around.