Archive for the ‘Pregnancy & RSD / CRPS’ Category

Initial Hurdles….

Sunday, January 16th, 2011

The last 3 weeks have been some of the most stressful, worrying and to be honest daunting!!The words head and brick wall spring to mind….We are getting mixed information from GP, midwives and ante natal consultants and to be honest could quite easily scream however we will just have to work our way through the hurdles.3.5 mths pregnant I am now off all my medications and have been for the last 6 weeks.  Hard going would be one way to describe it. Pain levels are up, cramps setting in and general symptons of my RSD / CRPS including mottling, swelling, cramps and joint stiffness / distortion already appearing worse and more recent (last 5 years) ‘spread’ areas are being affected quicker than older lower limb sites. Why – who knows or perhaps they are just playing catch up!!I think the most annoying thing is the distortion in my right hand as I can now no longer straighten my middle finger at all and the mottling is getting worse by the day. Thankfully I know the ‘keep using it or lose it’ mantra very well and know it works but being right handed still makes it hard going to do everyday things so just have to hope that it will stabilise and not deteriorate function any further.All in all though I do think I’m coping pretty well with the adjustment to no pain meds and my ever increasing tum… so hopefully a good sign though I wouldn’t complain about an easing of symptoms over the 2nd and 3rd trimesters! (please!!)We had our first meeting with the ante natal specialist this week and to us it was pretty much disastrous as they were just not willing to listen or taken on board what RSD / CRPS is or our concerns about how that alone will affect the pregnancy – so I foresee a battle ahead.Thankfully over the last 14 years with the disease I’ve learnt you need to stand your ground and fight your corner.  No doubt this means that I have written across my notes once again that I’m ‘awkward’ and ‘uncooperative’ however its not the first time and certainly won’t be the last.  Lets just hope that my GP and hopefully Pain Consultant will back us up and help us push the point.If not its going to be a really stressful few months ahead…until next time…

Starting a new journey with RSD / CRPS – Having a baby!

Sunday, January 16th, 2011


Paul & I are new ‘Parents to be’ and as I’m sure is the case with many people it is a jaw dropping, exciting, if scary experience. We are excited at the thought that in just a few months time a little baby (or not so little by the feel of things thus far) will join our little family of 2 (and many furry friends). We are really looking forward to being parents to this little boy or girl currently known as Baby Ross but it is also a very scary, difficult journey for us too.Today has been the toughest for me so far and Paul has been my rock as always. I suffer from what is known as Reflex Sympathetic Dystrophy (also known as Complex Regional Pain Syndrome) which is a disease though some may call a dysfunction of my autonomic nervous system that effectively causes it to misfire greatly with the end result I spend 24 hrs a day in constant burning pain, hypersensitivity to touch, blood flow issues to limbs and a range of other problems not least deteriorating bone density (osteoporosis) and diminishing soft tissues, muscle in my lower limbs.Now planning a family was always a hope that would be on the cards however our biggest stumbling block was always going to be my RSD / CRPS.   We have no idea how my RSD / CRPS is going to react to the pregnancy, will it affect our baby? how will I cope… we just don’t know.

Unfortunately much to our dismay information on pregnancy in Type 1 CRPS women is pretty much non existent. So, we will just have to discover the journey ourselves and hope and pray that we are lucky enough to have doctors willing to listen, understand and adjust our plan accordingly.  That, may in fact be the scariest part of all and anyone reading this with RSD / CRPS will know exactly what i mean.

On top of our usual baby excitement and worries we are both currently very worried at the fact I have been on my medication for the first few weeks of the pregnancy, which consisted of opiate based pain medication and anti depressants.  How will this have affected the baby? will everything be OK? how will we cope with my disability and a baby without medication to help see us through? How will my RSD / CRPS react to carrying and delivering the baby?No one really knows and as each case of RSD / CRPS  is unique it is very much a learning curve all round.Is our baby wanted? – more than anything in the world but the journey from here to birth and beyond is going to be scary, emotional and one of many challenges.I hope that by keeping this diary it can help us look back on the ups and downs of this wondrous journey… and feel proud we made it through them one way or another and may even help others in the future who are thinking of going through the same experiences.

until next time…