Pregnancy Forums

Posted: 10 April 2008 at 10:19am | IP Logged

Hi hun

I have someone in to help me with my housework; it helps me keep my sanity if nothing else.  As for dh helping you on with your knickers my dp doesn’t mind either but he always makes a comment like I prefer to be helping you with them off!  One track mind, even though he’s very patient and waits months at a time. I think it personally helps me knowing that he still loves and wants me even though it seems that I’m falling apart.

I’m sorry and surprised to hear that your health service is worse than the nhs (yes it has it’s good moments and I’m not digging it completely but it seems like your forever waiting and waiting beyond what feels like mths), and I’m sorry to hear your labour was suck a pants one.

As for everything you’ve tried it does get very frustrating trying to find the next stepping stone up the ever growing mountain. Have you contacted the pelvic partnership trust? They recommend people who might be able to help when you can’t make heads of tails of who’s worth trying and throwing money away on.  I have had to give up any hope of working and have been registered disabled to try and get the help I need.

It’s very hard t keep going for your children some days but they love us all without judging us and even my 6 going on 7yr old doesn’t really care that I can’t kick a football or go bike riding but he knows I’ll do my best, even if it means he goes bike riding and I go our with him trying to keep up which is hopeless on my mobility scooter as he’s got some speed on him!

I agree about the drugs you can take as much or all of them under the sun but they never work fully and can leave you doubting if it’s worth taking them at all….. but they do help numb it.  Congratulations on making it into the bath! I couldn’t do that for love nor money and now my dp’s back is bad he can’t lift me in or out! I’ve been in contact with occupational therapy to get aids to help me out in the house (referred via my gp and physio) and have been given details of a centre locally which has living aids on show to help. It seems very much a case of if you don’t ask you don’t know. As for driving I some days find it very difficult and over a year ago I sold my beloved manual car and got an automatic one which I find a lot easier.

I haven’t recovered but I am looking and possibly going to have prolotherapy, I have had a trial injection so far to see if it gives any results which it did and if it’s decided to go further ahead then I’m looking a long road but I won’t know if it’s a go till june when I see the consultant again.

Keep fighting for what you need hun, I hope you get the medical support that you need soon and I hope your family members get the hint with the bits on the fridge x

Posted: 13 April 2008 at 5:34pm | IP Logged

I have just registered on Madmums, my reason? All your info on SPD! What you have written about chronic pain really struck a nerve with me (no pun intended!) I have had bad SPD since last March. This time its been so bad that I'm currently registered as disabled and I use a wheelchair. The pain pleases itself and sometimes you can see no end to it, something that is fine to do one day can cause you to be in absolute agony the next.

I think I can say that I fully understand what you're saying as I'm still living it 6 months after the birth of my youngest son (I've 4 children), and its not getting any easier, luckily my other half is fantastic, he carries me in and out of the bath, up and down the stairs not to mention stopping work to care for me and our brood!

Remember this, you can't appreciate the rainbow if it wasn't for the rain!

Posted: 13 April 2008 at 6:56pm | IP Logged

Hi hun

I completely understand what you mean when somedays it's crippling and others it's like it's virtually non-existant (well in comparison to the bad days!). This i think makes it hard for others and on us as it fluctuates so much and can hit us so hard when it wants too.

You sound amazingly positive which is what you need to have to help get though each day.

Hugs hun and chat soon x

Posted: 14 April 2008 at 12:24am | IP Logged

Thanks so much for your response. I always knew there were other women suffering as a result of SPD but when I first had it there wasn't much info out there! I'm fortunate, my first 2 pregnancies were SPD free. It was the youngest 2 that caused problems (something to do with turning 30?) The first time I was on crutches from 16 weeks and in a wheelchair by 7 and a half months. Luckily I was back on my feet minus crutches 7 months after our second daughter was born. I was told by my obstetrician to leave it 3 years before we tried again, but, as we all know, nature finds a way and I found myself pregnant again in February 07. A termination was never in question and I found myself on crutches when I was just 9 weeks gone. The wheelchair came sooner too, I think I was about 4 or 5 months pregnant when I got it and thats the position I'm still in. Waiting for hydrotherapy and physiotherapy too. I've also been told that I really shouldn't have any more children as the wheelchair will be permanent!

One last thing, for any pregnant sufferers out there who want a home birth. It is possible! I've actually had 3 home births and the ones where I Had my SPD were easier, this is obviously a personal opinion but you shouldn't feel its impossible!

Take care!

Posted: 14 April 2008 at 8:25am | IP Logged

Hi hun

I'm glad to hear you bounced back from it last time and i hope the same happens this time round for you..... fingers crossed.

It's all very well them saying that you will be perminatly in a wheelchair but i don't think a lot of the medical profession still understand this condition and just tell us about the worst case that could happen.

As for it being something to do with turning 30 i'm afraid not lol.... i'm going to be 27 this year and i know other members are younger than me have it.... lol case of wishful thinking there.

I'm glad to hear your seeing a physio and are waiting for things so start happening for you. There are other options like prolotherpay, chiropractors etc if you wish to try other things if the hydrotherapy doesn't do much for you.

Stay strong and have fun (well we have to try), take care and we'll chat again soon x

Posted: 14 April 2008 at 9:58am | IP Logged

Hi hun, welcome to madmums!

My names Maddy, I'm 23 and have had SPD since I had my son aged 20 - I was 8 weeks when it started, on crutches by 20 and in a wheelchair at 30 - I was hospitalised on morphine by 37 weeks and had an emergancy C section after 3 failed inductions at 38 weeks.

My SPD went away and I was over the moon, then when my son was around 4 months it started to return and got worse and worse til I was back with sticks and looking at a wheelchair again. I saw an orthopedic surgeon who did a nucular scan, diagnosed me as having 'severe SPD' (also known as DSP) and told me I would never walk unaided again without surgery.

Now, me being me, had already done my research and knew that surgery didnt always work and sometimes left the sufferer in a worse position, when I confronted him he agreed that this was often the case, and he was very reluctant to opperate on me so young.

So I did my research and tried everything I could - my physio tried many different techniques on me, I had acupuncture, many different types of medication, saw an amazing chiropractor who got me to a much better place, then the breakthrough when i got a referal to a pain clinic.

The consultant (one of the best in the country) diagnosed me with hypermobility and was the first person to treat me seriously and give me hope.

I am now 18 months into prolotherapy (injections into the Symphysis Pubis joint and Sacroilliac joints) and for around 2-3 months following treatments  am actually pain free! I have the treatment every 4 months so i do still have bad times when i am reliant on morphine to get me through the day.

But when it works its brilliant - last october I cantered up a beach on my honeymoon, my dream and something I thought I would never do, then early this year I started cycling every week and doing salsa classes!

I am telling you this because there is hope! And just because the medical proffession say something doesnt mean its set in stone.

I'm sure I'll get to know you much better hun!

Posted: 21 April 2008 at 1:52pm | IP Logged

thanks, this sums up the situation perfectly.

Will be emailing it to all who know me, as sometimes they think I've become selfish/forgetful when promise to do something and fail.