RSD/CRPS Anyone?

Hi everyone!

I'm Kate, I'm a 27 year old married mum with three kids, and I have RSD. This is a chronic pain condition, with no cure and not a lot of useful treatment options. The pain is rated higher than childbirth (on the only international recognised pain scale used by all the medical field), and this is what we live with day in, day out. It's no fun :mad:

It's quite similar to Fibro, some of the symptoms overlap. Pain is the main symptom, in the form of muscle pain, nerve pain, deep bone pain, spasms, cramps, shooting electric shocks, stinging pain, and touch pain (which is a nightmare, even a breeze feels like someone's hit your arm, touch from a person is a definate no-no)- and you can have a few of these going on at once. Then there's weakness, muscle fatigue, a huge temperature drop, swelling, purple mottled skin, stiff joints- you wouldn't wish this on your worst enemy.

I have my RSD in my right arm, from fingers to neck. It started from a blood test that caused trauma to the median nerve, now my whole sympathetic nervous system is buggered.

This started when my eldest daughter was 2years old, and my second was 7months old.

I also have a son, who's three now, who was born post-rsd. I went into a form of remission during the pregnancy, which was great! Although it was hard after he was born, as the pain came back, my meds that I had taken before no longer worked, and I was trying to manage 3 kids one handed, and in a lot of pain. But it was worth it, I have a gorgeous little boy!

I'm now having a much needed break. I had a ketamine infusion in March and am still free of pain- I'm so happy to have my life back! There's no way of knowing how long it will last, this is still a pretty new treatment and everyone is different, so I'm enjoying everyday, but also very aware that it could all come back any second.

But we've decided to go for baby #4- something we never thought possible! I'm hoping that between the benefit I'm still getting from the ketamine infusion, and the pregnancy hormones, I'll have a pain free pregnancy!

Anyone else here have rsd (its also knows as crps, that's why I wrote that)?? I'd love to chat with other mums/mums-to-be.

This is a long post, sorry!

x Kate

HALLELUJAH!

Kate, I hope you won't feel stalked. I have been desperate to find another CRPS Mum. I have a 14 month old divine son, Owen. I've have CRPS for 20 years or more, but only diagnosed about 4-5 years ago. Used to be mostly my legs, but lost the use of one arm after the birth of Owen - still don't have it back - due to a drip for post-birth infection. Mothering a baby who was nearly 5kg at birth with one arm has been so hard and I have felt so damn alone!

But you are a one-armed Mum too!! :)

Have lots of pain across my tummy from the stretch marks, could hardly breastfeed initially, but still going now. Presume this is CRPS. Pregnancy was great, hardly any pain but a mess since.

I also want another!

Found you in a Google search. There's too many obscure pains, now my hand not functioning properly either, seems to 'forget' to move, I have to look at it and concentrate so hard...

Would love to exchange some experiences.

Am in northern NSW - moved up from Melbourne due to the condition, when I was pregnant. In Mel, I'm on a walking frame and many days unable to walk. Here I'm much better off. Though haven't found good medical help yet.

Long post !!

:)
online erratically, so advance apologies for any delays.

Warmth,
Josie

Hi,
I'm so relieved to find other people who have decided to have a child whilst trying to manage crps/rsd. I have just recently found out that I m pregnant with my 1st child- and am feeling not too bad apart from the intense hot flushes?!? I was diagnosed with crps a couple of years ago- have battled ever since!! I have spent many months on and off cruches but have managed to return to work- although sometimes I find that my body is at work but my mind is consumed with bizarre pains!!
I have been looking into how pregnancy generally affects people who suffer from crps and have found the info to be quite encouraging. However, I'm petrified of the pain of birth- not for the usual reasons but more scared fo how much my leg and lower back will hurt. I'm scared of some big shot midwife telling me that I can handle the pain of labour and birth whilst not listening to me when I say that it's not the labour its the crps!!
I'm also worried about how I will cope when it's just me and baby at home- there may be a few phone calls to dad at work in the first few months!! And another worry for me is the drugs I'm taking (Lyrica, nortriptyline and clondine; and occassionally neurophen plus and panadine extra)- yes- no real pain killers which has many positive and negative aspects regarding effects on my health and baby's health.
My GP thinks crps is a type of mental disorder but my Pain Management Specialist is pretty good so I'm going to try to get into see him to discuss my pregnancy and birthing plan- and to basically seek reassurance!!
Any pointers???
Cheers,
Kate W

Hi,
I just tried to post a reply but somehow lost it in cyber space I think, obviously not too skilled in the i.t. dept!! Maybe the last post was just too long!! Anyway- I have just found out that we're having our first baby but I also have crps in my legs and a bit in my arms, I was diagnosed about two years ago. So far I've been feeling better than usual which is great. However, I'm terrified of the pain during and after birth. I guess most women are scared of the pain of childbirth, especially with their 1st baby, but I'm more scared of the pain in my leg/s and lower back (crps is primarilly in left leg). Any pointers?:pray: Cheers, Kate W, 26yo pregnant and scared!!

Hi Kate

CONGRATULATIONS ON YOUR PREGNANCY! How wonderful. How many weeks are you?

Here is my experience re pregnancy: I was told to get pregnant to improve my CRPS. Somtimes pregnancy permanently reverses, partly or totally, crps. The last time I went in for a(nother) infusion, the doctor simply said, 'what are you here for this for? why aren't you pregnant?'
I got pregnant because I wanted to be a Mum - and I love it!! - not for this...
BUT I was SYMPTOM-FREE, virtually, for my pregnancy. I have had the condition for over 20 years (since my teens) and the freedom and happiness of my healthy body was wonderful.
I then gave birth to a very healthy 4.76kg boy with an epidural not for pain but for dilation, after 18 hours of labour. This was then taken back and I had him naturally.
IT IS NOT NORMAL TO BE AFRAID OF CHILDBIRTH! :) We usually get such attitudes from the media and from our experiences (eg, females in the family). My Mum was very positive all our lives: pregnancy and childbirth are normal and natural, nothing to be afraid of. Anyway, as a CRPS sufferer, congratualtions, you have been through lots of pain and probably will SAIL through labour like I did. It took my partner 8 hours of labour to convince me I was in labour, so how's that?? I said, 'No, it's supposed to be painful', and didn't believe I could be in labour therefore. It is a laugh compared to CRPS. As a lot of other Mums may tell you, it is an intense feeling you need to concentrate through, labour, rather than this terrible pain thing depicted and promoted. And, guess what? - in labour, there are BREAKS frm the pain, it's cycles in and out. UNLIKE CRPS where you get no break. Once you want to push, there isn't much break, but strangely, when you push, the pain isn't there anymore, your body is just working, doing what it's been working to do (bring you your beautiful baby to hold).
The big thing is, if you have CRPS, you will probably want to avoid interventions, because these will leave you in trouble. I found a great doula who led meditation and relaxation classes, and also educated us about the medicalisation of childbirth (often unnecessary interventions, for the sake of insurances etc). I'd recommend something positive like this. To mediate through CRPS is great - through labour it's also wonderful.

OK, the down side. I got an infection post-birth and they put a drip in to give me antibiotics. BECAUSE OF THE DRIP (INTERVENTION) I LOST THE USE OF MY RIGHT ARM. Previously had had CRPS in both legs. 14 months later, I still don't have proper use of that arm, and can't hold my son that side. CRPS.

So, I'd recommend avoiding interventions. You'd know all about how they make us worse so often. And get a bunch of positive women around you who are pro-natural birthing and just trust your wonderful body to operate in the way it was designed.

Enjoy your pregnancy - and sorry for long post and to sound directive. I realise this is only one experience. But next time, I will say no to a drip! I was too sick to think about it.

But birth and motherhood are wonderful, congratulations to you!

Hope this helps a little,

Warmth,
Josie

Hi everyone,

I've just now done a search on Google looking for any information on CPRS and pregnancy. I found this site with your messages. I was diagnosed with CRPS 7 years ago after fracturing several vertebra in my cervical, thoracic and lumbar spine from a car accident. I've lost a lot of use of my right arm. I have had 5 miscarriages over the past 3 years and now I'm in my 28th week of pregnancy and have a healthy babe growing inside - a blessing, miracle and I'm in absolute awe of what my body and this baby has done.

With my body getting bigger and all of the extra fluid, my respite from the pain (for the first 5-ish months) is now no longer. I commenced aqua classes through the hospital yesterday afternoon and as a result, ended up in the emergency dept/labour ward of the hospital due to my arm/hand having almost doubled in size, turned blue, pretty much dripping with sweat and causing me excrutiating pain. I clearly aggravated it yesterday with the exercises we did in the water.

Unfortunately, a lot of the doctors in the ED have not had a lot of experience dealing with this disorder and therefore have no idea what to do with me or how to treat me. I've now had enough experience to know what I can do (drug-free methods at the moment) to reduce the symptoms, I was more worried about babe and my what he/she may have experienced once the incredible pain kicked in.The good news, babe is fine and we heard a beautiful and strong heartbeat. Me on the other hand have had a bad day of pain but the swelling is now reduced as well as my skin looking pink again.

I worry a lot about holding baby on my right side to breastfeed and cuddle as it causes so much pain and grief to my back and neck. It was nothing short of reassuring to read of other mothers out there who do most of their caring of babe one-armed.

I just wanted to say hi and let you all know it was so lovely to not feel so alone - as I have been doing for the last few weeks.

Take good care,
Nettie

Hello!

I'm so happy to find you all! I've had RSD in my right foot for 12 years. (tripped down some stairs and broke my foot) I'm 28 weeks pregnant and doing great. My only concern is having the baby - I'm afraid of my RSD spreading! For that reason, I want to decline an iv during labor and I'm hoping to avoid an episitomy (sorry for the bad spelling!) and a c-section. I was wondering if there were others that did have any of those things done, and didn't have there RSD spread because of it.

Thanks!