Pregnancy Forums

Posted: 27 February 2008 at 12:07pm | IP Logged

I've just found this site after being in SPD wilderness for 7 years.

I have 3 kids, but didn't get my condition diagnosed until 29weeks into 3rd pregnancy. By then too little too late. Had mild in first, severe on second but symptoms cleared up after birth and had it by 8 weeks on 3rd. Spent most of 3rd pregnancy housebound in pain.

Was induced at 35 weeks as so bad, but unfortunately never cleared up. Then took further 2 years to get it recognised that was same condition from pregnancy. When finally taken seriously had physio who stated sorry but nothing could be done to help me. Then was referred to Mr Mohanty.

Had pelvic pinning in December 2006. Two plates on rear and one on front. Unfortunately didn't work for me, so am now in severe pain, crutches for short haul, wheelchair for bigger and slowly getting bigger, lazier and stiffer.

Currently doing pain clinic to try and learn to manage pain. But sometimes am ready to give up.

Migraines made worse by stress, had to be weaned of tramadol after 4yrs (just before Xmas, perfect timing) and now taking: cocodomal, dyclofenac and amitriptyline to manage daily, with extra meds for migraine and stuff.

Guess am just hoping to talk to other women who have same condition and perhaps not feel so alone. My mother thinks is all in my head and get over it. My husband tries but sometimes I can see he thinks maybe I'm putting it on a bit.

Perhaps because is invisible condition that others can't realise just how delapidating it can be.

Posted: 27 February 2008 at 12:12pm | IP Logged

Firstly hello and welcome.

You are not on your own hunny and i know there are a few women on here who suffer as you do.

I cannot help as i do not have this condition but i do have other hip problems which i have just had surgery for.

Anyway the other ladies will be around later.

We know its not in your head and you will get loads of support on here and you will meet some lovely ladies! xxx

Posted: 27 February 2008 at 12:30pm | IP Logged

Hi there. I'm maddy, I'm 23 and mum to Edward who is nearly 3. With live in cambridge with my Husband Tony.

I was diagosed with SPD at 20 weeks into my first and only pregnancy, although I had been having ligament pains from 8 weeks. I was on crutches, housebound, in a wheelchair to leave the house and bed bound in hospital from 37 weeks. I was on morphine and was given an emergancy C section at 38 weeks.

The SPD went away, but came back after around 4 months, getting progressively worse until I couldnt walk without a stick. I developed a very positive attitude to the condition, although it was very hard, and was determined it wouldnt beat me.

I was given nucular bone scans and xrays and told I would need surgery if I ever hoped to recover, but that it was not guaranteed and at my age might put me into a wheelchair for life. I said thanks but no thanks and kept looking.

I tried acupuncture, all sorts of pain medication (dihydrocodine, cocodomol, paracetamol, meptid, diclofenac, amitiptaline, and many others i cant remember the names of), physio and all sorts of laser and manipulation therapy with them, then I went to a chiropractor who was the first to start the change in my life. She specialised in pregnancy conditions and within a couple of months of seeing her, no longer needed my stick and started slow exersize classes to start restrengthening my ligaments. However I was not cured and still had a lot of pain.

I then got a referal to a pain clinic. Dr Munglani was the first consultant I ever met who seemed to believe and understand my condition and offered me hope. I cried when I left his office because I had got to a point where I thought maybe it really was all in my head as noone ever seemed to believe me. He diagnosed me with hypermobility in my joints and severe spd.

That was around 18 months ago and I have now had 3 prolotherapy treatments. These are injections into the symphysis pubis and sacroliliac joints which strengthen the ligaments. I have them 4 monthly although this is going to change to 3 monthly as they only last about 3 months on me at the moment.

However the change is amazing. After the injections I can behave as normal, I went horseriding on my honeymoon last year and I have started salsa dancing and cycling this year. There is still a long road of treatment ahead of me but Dr Munglani believes he will have me fixed within a few years.

Oh and I suffer from migranes too so I understand that too!

Madmums offer a buddy scheme for SPD sufferers which you can access on the link under my post if you want to talk to someone one-to-one.

There are a few of us on here and we all do our best to support each other as much as possible.

Look forward to getting to know you better.

x

Edit: meant to add (sorry about the essay!) have you had any contact with the pelvic partnership as they were a lot of support to me.

Also I know its terrible with the way noone can see the condition and I know my husband really stuggled to understand the amount of pain I was in. I found sometimes writing down how I felt hoped, and also showing him posts on here by others so he knew others were going though it too.

There is loads of other stuff I have forgotten but will add later. There is an article here if its of any help.

Posted: 27 February 2008 at 2:04pm | IP Logged

Hi. I'm Kim, mum to Rebecca 13, Ruthie 11 and Cameron 4. I'm also pg with No.4. We live in Norfolk with dh.

I'm sorry to hear you are in so much pain at the moment. I too suffer from SPD, and have done since I was expecting Ruthie. I ended up being induced at 38 weeks because of the pain (my consultant was on 2 weeks hol prior to that, and no-one would make the decision without his say-so). I ended up with a zimmer frame, and having to crawl on my hands and knees - it used to take my husband 10 minutes to slowly ease me over in bed and help me get up. It is a horrendous pain, which a lot of people don't understand. I was sent away in agony from one consultation with a different consultant, who told me it was normal and to pull myself together (I was crying with the pain it caused getting from the car into the antenatal dept). Luckily one of the midwives was fantastic, and gave me acupuncture - which I do think helped a little - and managed to push for me to be induced early too.

Unfortunately it has never gone away - although definitely has periods where it flares up worse. Somehow with my pregnancy with Cameron, it hardly gave me a twinge (a miracle!), but since I have had a lot more bother. I did see an osteopath for a while up until last year, but we were posted down to Norfolk with the RAF and I've never found one here. I do have physio at the moment.

I'm quite worried though, as for the last few days my SPD has started to flare up again - I'm in a lot of pain when I stand up today - have a horrible feeling this pregnancy isn't going to be as easy as Cameron's was! I have the same painkillers as you, although obviously I can't take them at the moment with being pg again (this one was a wee surprise!)

I hope you get help from the pain clinic. I was amazed at how common SPD seems to be these days - and it does make a difference being able to talk to people who understand. A big welcome to the site - I'm sure you'll find lots of support here.

xxx

Posted: 27 February 2008 at 2:04pm | IP Logged

Hi hun, welcome to the site…. I'm Tsena I live in Cambridgeshire with my dp and our 2 boys. (6yrs and 22mths).

I was misdiagnosed during my first pregnancy and was told that the pain was just a trapped nerve and it would go away once I’d had ds. This subsided but always left me with week hips and pains at time of the mth.  Then when I was pg with my second I had the pains early on…..can’t remember the exact dates but I do remember trying to get to the loo to throw up then sobbing as my hips hurt from sitting on the floor etc. This continued for a while, and by November I was to the stage I was when giving birth with my first. I also was having bleeds, and the hospital I went to was adamant it was just a trapped nerve…. This continued for 2/3mths till I couldn’t get out of bed…. I wasn’t walking and hiding away, the hospital said nothing they can do for a trapped nerve I was ready to just give up, by dp wasn’t he drove me to another hospital in a different county as it was as close as the other one and within 10mins of being in the building I had a label a name and a referral for crutches, which helped but ended up in a wheelchair when out and about as my house wasn’t chair friendly….. I was induced and had a normal delivery as my consultant didn’t want me risking more damage to my structure by having a big cut etc. My youngest turns 2 end of april and I'm still using crutches and have a mobility scooter that I use whenever I can…. But it’s hard with 2 kids and 1 who’s still to young to stay put and sit still when he wants to run, walk and play.

I too like madz have tried numerous medications to get the pain under control but to little or no success! I have been referred to Dr. Munglani (same chap madz is seeing) and I’ve been offered the same treatment (prolotherapy) which I'm going to on Tuesday for my first set…

I'm also under investigation for the joint hypermobility I have as it’s painful joints and pains all over….  Which is happening though rheumatology.

I'm sure I’d be treated better and the looks some people give me when I'm in my scooter are horrendous…. I'm sure if it was a visible like a broken leg I wouldn’t get. As for the feeling of giving up, we all get like that some of us more often and I have found myself slipping into a state of depression as I feel worthless and helpless for my children, but that’s getting sorted later when I see my gp. But our children seem happy and care free and have a wider understanding of life.  As for the headaches I take medication at night which gives me headaches and it’s a pain big time….

It’s hard to get across to people who aren’t in the same similar boat…. It drives me crazy sometimes…. But I have made some really good close friends on here who are in the same boat and it’s such a relief to know everything I say is understood and not questioned…. It’s a relief and a blessing in disguise.

Chat to you again soon hun, take care.

sorry i too have written what seems to be a mini essay.... sorry it's just us showing or trying to that we care

Posted: 27 February 2008 at 2:51pm | IP Logged

to you all, thanks so much, and please keep the long replies, they are so helpful!

It is just so great to read of others who have similar battles. Up to now I've been alone, with the odd article in a mag to show that others suffer.

I hate how limited I am. My kids are trained like puppies. When I occasionally manage to get out, they know to stop, stay and wait on command. Get odd looks sometimes, but I know that my kids are safe and even the youngest (Boo - son age 4) isn't at risk of running onto road.

I think the most depressing thing about this is that I know the pain will never ease, the treatments currently available here in South Wales have failed and that I am progressively getting worse and expect to be back in wheelchair in a few years. It is hard sometimes to keep positive.

Posted: 27 February 2008 at 3:17pm | IP Logged

Hi hun, xxx

I haven't been through SPD but I wanted to welcome you anyway, xx.

I'm Hazel and have 3 kids, Bex is 16, Sophie is 5 and Adam is 3. We all live up in the Highlands with my hubby, Andy.

Posted: 27 February 2008 at 3:57pm | IP Logged

I know its difficult but I truly believe positive thinking is the key.

I was told i would never get better - now I am a completely different person. It can happen. I do know though that when the pain is so bad and the frustration of not being able to be a 'normal' mum is there, it can be hard to see a positive future.

Have you been offered prolotherapy? I travel a 2 hour round trip for mine as it is avaliable locally but its worth it.

What else have you tried/been offered?

Posted: 27 February 2008 at 7:29pm | IP Logged

Hun

Just to follow up what madz has said i agree..... yes don't all fall off your chairs!

I would also look into your rheumatology department about having hypermobility as depending on the results they might be able to offer a glimmer of hope etc expecially if the surgery was partial sucessfull and it's down to loose ligaments etc.

Hugs hun.... i too have been told within a couple of years i'm liekly to be wheelchair bound.

Posted: 27 February 2008 at 8:19pm | IP Logged

For the record -

a) Zany almost never agrees with what I say!!! (mwah honey)

and b) I am fighting tooth and nail for her to make sure what shes been told doesnt happen! I have beaten the odds and I will work tooth and nail to help everyone else. It was me who got her the referal to my pain specialist.