Pregnancy Forums

Posted: 05 June 2008 at 10:59am | IP Logged

dear madmummies,

firstly i feel like i should owe you all an apology. i am really confused and now the dust has settled as it were i feel i can now start to look at all that has happened.

when i was pregnant i had to endure the spd and every month i have almighty pain during my period and i am reduced to doing nothing. as you know i have continued with pain and though i have been working and slowly getting back to life i had a fall on 16th feb and this really flared everything up. back to cruthes, strong pain killers and no more working not to mention being severely limited in daily activities. i have been going through possibly losing my job and still not back at work as i know that i can't return to that clinical environment. i want to go back to work but if i have to take a desk job then i shall, i have to maintain financial stability and so no choice.

i have been seeing physio and been given exercises to do and as the core is so weak the pelvis itself is not particulary supported. i have pain and am subjected to taking tramadol and co codamol and nurofen. i struggle to maintain the output that i was managing and have to endure every month a massive flare up of pain. i had an xray and bloods and i got to see a rheumotologist the other day. this is where i feel very mixed up! i hope you can understand. i know poor tsena has been subjected to me moaning already! he said that my xray is normal. there is no signs of inflammation and he thinks that i just have chronic muscoskeletal pelvic pain! he did an assessment of moving and said i had a good range but i had kinesiphobia (scared of moving to me and you!) i told him of the pains i have been getting, a good example of which is if i have been walking too long i get pain in my pubis and feel rubbing together and there are always shooting pains in my hips. i said that my dh and i have not exactly got the best relationship as i always feel like i've been kicked inbetween the legs.he told me to chat to the gp as there are services we can use. when i questioned him what services and what do they offer/do. he told me he didn't know and wasn't even sure they were in the cambridgeshire area! he's not going to refer me to pain clinic but he wants me back in 4 months to see how i am then possibly refer me then as there are lots of ways to deal with pain not just tablets. he has said for me to stop one of the tablets though. the other bit though was that it's fab news there is no damage and i am relieved but i feel so confused. i click when i move i have the hell i went through when i was pregnant and the limitations i feel now but i feel like it's been dismissed and down played. i now have to deal with work and they will be horrendous. give dr shenker his due he did put up with me crying all the time! he was trying to be kind and also he had said that he will get me enrolled in addenbrookes physio not just the gp one. i've been trying to get this done since feb! he said he is going to get them to put me on a rehab work programme and though he drafted letter in front of me he has stated i cannot go back to my current clinical environment which i guess helps as then work have to believe me, but this really does mean that unless another job comes up in the trust then i am without a job. 

please do not be mad at me, i feel like i have been lying despite the fact that i know how i feel. he did offer me amytriptilline but i refused. partly because i am sick of taking tablets also i can't afford to be a zombie.

he also said there has been no problems with my hormones...so what the hell do i do now?

sorry to moan i just feel so muddled, emotional and sore!

Posted: 05 June 2008 at 12:01pm | IP Logged

Ok firstly DONT be sorry! You have absolutely nothingto be sorry for.

As for the xrays - SPD is not always obvious in xrays. I have had x rays which show my pelvis is fine, and others, including a nucular bone scan, which showed severe/extreme SPD/DSP. I have been told I have SPD, DSP, and also that I dont have either. It al depends on the consultant, they're experience, and the way your hips behave on the day.

Ask your GP for a referal to West Suffolk Hospital Pain Clinic - I am in cambridgeshire and got a referal so you should do too.

I saw a wonderful Chiropractor - Alison Edwards, who practices at Wyton and Cambridge - she understands SPD and really really helped me prior to my injections - she gave me hope and got me walking without the use of crutches or a stick!

The important thing is to keep fighting and stick at it. I would not have just ran home from school with my son and my tsenas little one if I hadnt fought my corner and been determined not to give up.

Good luck sweetie x

Posted: 05 June 2008 at 2:58pm | IP Logged

Hi hun

Firstly never apologise for moaning/off loading or chatting to me! It's lovely to know that we have become friends and that you can turn to me.

I know you’ve been having a battle everyone has a battle and life is never easy…It would be boring if it was. As for going back to work it is up to you and it’s a shame you can’t go back to itu nursing but could you possibly work in one of the out patient departments? It’s steadier than a desk job, yes it’s still on your feet but it might be a possibility if you can get the pain managed in a while etc… so take each day at a time babes…  try not to do a me and think of the worst case scenario all the time… I know you have to be realistic but you might be able to find something. 

I too have weak core muscles and an x-ray that looks normal but as my physio said that might be normal for someone but not for me. She also said that ones laying down etc will never show the full story as my hips are wonderfully stable if I’m lying flat on my back but as soon as I move ops big mistake my hips click, grind etc. A stork position is the only way to show the full extent of the problem but not many people can do this. I have had an mri and that has shown pubic ostiosis (sp) but otherwise my bones are in good condition too. I have hypermobility (did you have that looked at and ruled out?) the ligaments are my second big problem. They are way too weak to hold the joints as they should and that’s not just in my hips, knees, ankles, wrists, shoulders and jaw. I have been told that there is nothing they can do but I can have physio and muscle strengthen exercises to try and stop my muscles wasting away putting and delaying the wheelchair. Nothing is never easy or clear hun… I was told to work though my tears and suck it up. I have over extending joints and pain with them but when I walk I walk within the parameters of my pelvis not because I’m scare it’ll hurt but because it does. It’s hard for some not to understand.

Doctors seem to be good at leaving us feeling numb and confused. It’s a pain in the bum but you and all pain sufferers know that! Lol I never had to get referred though a consultant to the pain clinic in bury st. Edmunds my gp did it… so I would personally keep pushing them hun.

Look at the positives hun they’ve got you one step further to getting one part of your treatment, your bones are healthy, but it doesn’t mean that you don’t have pain or something that they can’t see. Hun I will never see you as a liar, doctors don’t always know what’s right or always have the answers. I hope things work out or you get seen soon and you get something more concrete etc. I understand the lack of control in your life and you feel you want to stop taking tablets that feel like they do absolutely nothing and not wanting to be a zombie due to medication I’m one of many fighting the medication battle.

So now you do what you’ve been doing keep plodding taking each day as you go, keep pushing for the pain clinic and wait to see what the physio has to say and if it has much effect. Enquire about hydrotherapy as that might help you too.

Hugs hun x Text/call me whenever you need to I honestly don’t mind x

(Edited to add: Sorry this is a long post and if it’s full of waffle I just wanted you to know that things are never black and white, but we’re all here for you and that will never change x)

Posted: 25 June 2008 at 7:58am | IP Logged

thanks again for all support. i have the meeting at work tomorrow and i'm getting myself geared up for it but still nervous eventhough i have letters supporting the need for a return to non clinical duties i just don't feel easy about it. as i had let my union membership lapse when i asked if they could support me with the issue on resuming my membership i was told they couldn't.

i saw the dr at occy health who managed to rile me a little but came good with her letter to my manager. i said that i was relieved that the xray had shown no damage and she said yes well i guess it does make an improvement when you find out there is nothing wrong with you.!!!

the letter she did though stated i may take up to 12  months to get recovered over this and i must not return to clinical duties. trouble is in oour meeting she was insistent that i eventually get back to that role. when i told her i cpuldn't it's too labour intensive i was told i'd have to in time as i was employed as a clinical nurse and i would have to give it a go. ahhh, the good ol' nhs, not only do they mess up the lives and not give two hoots or even listen to us patients they make sure they are fair and do it to their staff as well! i'll play ball for now but i am not going back on crutches or wheelchair for anyone...so we'll see!

i've weaned off co codamol but still on tramadol and nurofen and finding it hard going.the pain is no longer as managed as i'd managed to get it. oh poo, i guess i am feeling sorry for myself not that i've any right too given the suffering you guys endure. probably becuase i've been up since 4 am but will keep you posted.