Open thread on SPD-pelvic joint instability in pregnancy

[Rosie]

Hi laura

It will definitely help for you to try to strengthen your pelvis now, befgore you try for a baby. Do you have access to an understanding physio? They should be able to guide you into exercises that may help strengthen your pelvis. Do be aware that it needs to be a physio who understands HMS/EDS3 though, and not one who will push you too far and do more damage, it is a fine balance. Maybe some other peeps coud give you more specific advice, but just thinking about it now puts you at an advantage.

Rosie

[Laura]

Hi Rosie

Many thanks for your reply! I have been doing pelvic floor exercises at work and recently started pilates classes, since I've read here how important good pelvic floor muscles are, especially after the birth. My gp is more into drugs than physio, but I have an appointment at UCH on Monday (with general rheumatology rather than HMS clinic, but I'm hoping for an internal referral) and one of the things I really want to push for is some physio. I know I have problems with my posture, but can't correct them myself, plus I'm fed up with drug-centered pain management anyway. But knowing that stronger pelvis might help with SPD as well gives me extra motivation to keep working on it, even though we're ages from having a baby still!

Thanks again!

Laura

[Laura]

Here is a question that occurred to me during the weekend. I know people are recommending silk nighties to help with moving in bed when you have SPD, but has anyone tried silk (or anything other similar material) sheets? The thought occurs that they might also help, but having no experience myself, I wanted to ask the experts!

Laura

[Hipster]

My husband and I are thinking about trying for a baby next year, so in preparation for that I'm doing as much research as possible. Given that my pelvis isn't great at the best of times, SPD is something that really worries me. So I wonder whether anyone knows of anything I could in advance to try to prolong or even avoid the onset of bad SPD? Or is it just the case of trying to be as fit as possible and hope that I'm lucky?

Laura

Hi Laura,

I had severe SPD in my last pregnancy (4th), also had it in my 3rd but it wasn't diagnosed until after my baby was born when I was walking strangley!!!. I am extremely Hypermobile and have EDS type3. I in fact didn't know I was HM until 2008 and my last child was born in 2005.
I had a lot of problems in my last pregnancy which resulted in me being admitted into hospital at 30 weeks as I felt something "go" in my symphysis pubis. Of course as I didn't know I was HM/EDS the hosp treated me as a guinea pig, and I was given morphine, pethadine etc to try and keep the pain under control which didn't work, they just simply didn't know what to do with me. Long story but had to have a c-section at 35wks(was decided by my obs at 20wks), got no better, had a double pelvic fusion in Feb 2007, My surgeon then should have tested me for signs of HM but never did, he opened me up and said "you were very mobile in your pelvis so I put in two plates to hold you together" The last few years tried everything from physio to injections etc, nothings worked. Now waiting to have all my metal work removed to see if it helps with the pain, my ortho cons doesn't think it will but it's his last option really for me.

Laura, I think by you doing exercises to strengthen your pelvis is a great idea, and also maybe see your GP to discuss any concerns you have. I should have been told after my 3rd child not to have any more but I wasn't, if I did I would have made sure that I couldn't have got pregnant again as my last pregnancy has basically disabled me. I'm not trying to scare you off having any children by any means, just be prepared hun, go into it with all the help you can get. Get physio lined up from the start of pregnancy. it does make a difference. All I was told was "we can't help, here's a belt and some crutches" but physios can help in pregnancy and it does help. And make sure you are obstetrician led as well as midwife led.

Sorry if this message has gone on, I hope some of it has helped. And who know's you may not suffer with any problems in pregnancy, I hope not.

XXXXX Helen

[Laura]

Hi Helen

Many thanks for your reply! You don't need to worry about scaring me, having read through this forum, I'm pretty well aware and pretty well terrified of what might be in store for me. At the moment we are still going ahead with our plans to try for a baby, although that may end up being re-evaluated when I have to come off most of my meds.

Since I last posted, my pain management has changed dramatically as now I'm having regular physio (who even knows what to do with me!!), I've just got special insoles fitted and tomorrow is my first appoitment with a clinical psychologist. My physio exercises are very much pilates-based and I've noticed a definite improvement in a relatively short period of time. I'm also hoping to start pilates classes at the physio in January and until then I have various things at home to exercise with. I've also been gradually losing weight, which is very pleasing.

I have already discussed trying for a baby with my gp and my pain specialist and I wasn't exactly thrilled with their reactions. The pain specialist said that I couldn't have any pain medication at all and would spend nine months in a wheelchair in absolutely agony, but if I was willing to go through with that, then congratulations for the baby. My gp said that she didn't really want to give me any pain medication either and if the pain was too bad for me to keep working during the pregnancy, then surely I could just not work for nine months. My physio said that I should do as much pilates as I possibly can and that I would probably need a support belt really early in the pregnancy to try to pre-emp or at least delay SPD. I think I like her advice best.

Not for the first time in managing my HMS the doctors have pretty much left it all up to me, but I'll be sure to demand physio as soon as a pregnancy test gives a positive result. And I'll definitely take any help I can.

With regards to getting obstetrician to look after me as well as a midwife, would that happen automatically because of my HMS, or is this yet another thing I need to pester someone with until they refer me on?

Thanks again Helen! (By the way, would it be okay for me to PM you with some more questions, as they are a bit off this topic?)

Laura xxxx

[christianne]

Hi Laura
I would say that your midwife would automatically refer you to obstetrician led care because of your condition, but you will almost certainly have to explain the condition to her. If you mention EDS 3 (which is equivalent to HMS and BJHS according to many experts) I find it gets more of a reaction,as more of the medics have heard of it.(but make sure they don't assume it is EDS 4 and panic!) I really question why you don't get any pain meds? That seems a ridiculous attitude! My (EDS 3) daughter had bad SPD from 30 weeks with my granddaughter(crutches, wheelchair etc) but didn't have it until 36 weeks with the 2nd pregnancy (my grandson aged 5 months) and then she had it only mildly - maybe carrying 1st child around had strengthened her? It's a thought, and if so then your physio exercises should help.
Christianne

[Laura]

Hi Chistianne

Unfortunately both my GP and the pain doctor seemed to be firm believers of pregnant women not taking any medications at all. My suggestion that my distress from pain is going to be bad for the baby fell to deaf ears. I'll have to see how things go once I'm weaned off tramadol in preparation for trying for a baby (I'm not happy about giving up amitriptyline, though!) and if things go as badly as I worry they will, I'll probably have to change GPs in an attempt to find someone more sympathetic. In the meanwhile, my fear of the pain is a great motivator to keep doing my physio exercises every day and strengthening my core at every opportunity. I realise that my fear of SPD is almost making me not want to have a baby at all, but I've just started seeing a psychologist specialising in chronic pain, so I'm hoping she will be able to help me with that over the coming months.

Laura

[StephJ]

Hello. This thread seemed the most appropriate to talk to even though there has not been any posts this year. I hope that is because nobody else is experiencing SPD at the moment!

I most certainly am, as you can probably tell at 2.30am. Not an unfamiliar time of the morning for me. I was diagnosed with HMS 5 years ago when I was 20 and the pain has only ever got worse for me. The pain started in my knees and is now in my ankles, wrists and fingers. I have been to every department the health service offers, I've even been diagnosed twice! The initial diagnoses when it was just my knees appeared to have been forgotten. I have seen specialists who believe that I am not in pain and am making it up and I have seen those who have said I will end up in a wheelchair by the time I am 35!

I am currently 24 weeks pregnant with my first baby and have had the back pain since a ridiculously early 8 weeks. My Midwives were understanding of the condition (I have a duo of midwives for some reason, I think one has hms), and they referred me to the physio department for the back pain and an obstetrician while ensuring that I was clued up on any issues that may arise with the condition. I said I take each day as it comes, but that I have a booklet that explains what can happen.

The physio lady was excellent. She explained what is likely to happen with my pelvis, back and any links to being hypermobile that I might need to be aware of. She was well informed and gave me a back support (I find it useful) and signed me up to pilates classes.

The obstetrician was different. I sat down and explained that I had been referred to him as I have Hypermobility syndrome and he asked me what it was and how I knew I had it. Instant tears (I am worn out from this question). He did not touch my notes and even after I explained the beighton criteria and years worth of appointments and physio and alternative dental anaesthetic he said there will be no problem with Hypermobility in pregnancy, he has never experienced any issues in his career. I was incredulous. What else could I say? When he could tell I was upset he said I should be happy that there was nothing wrong with me. I tried to explain it was because his view was entirely contrary to everything I had been told up to that point. I was unhappy that the person who may well be supervising my childbirth efforts appears to have no knowledge of the condition that has caused me to suffer chronic pain for ten years. He continued to say that I would not have any pain from hms and that he could not say any further. I was too upset to carry on and said that I accept his view and apologised for wasting his time. That comment was probably what resulted in a sarcastic letter being sent to my GP a week later!

That is just the (long-winded) back story. At this point I was 21 weeks and I had been experiencing pelvic pain for 3 weeks. That was 3 weeks ago and it's now excrutiating when I move in certain ways. I know it was to be expected to some extent but this early? For crying out loud! I want to grizzle about it. I will speak to the midwives when I see them on Tuesday but I am reluctant to go any further for help. The obstetrician clearly will not acknowledge any pain that I might be in. I have no worries that my baby will be ok but I would like to be able to walk without my pelvis locking and turning over in bed without sweating would be lovely too. I can only follow instructions to 'take it easy' and hope for the best.

I apologise if I have gone a little off SPD topic and has turned into a rant but SPD was the reason for me to post in the first instance. I am so sorry to read that this is only one in a long line of posts regarding physicians not believing or acknowledging pain. I will carry with me a photocopy of my booklet in future!

Thanks for listening.
Steph.

[gila]

big BIG hug!
could you get the physios (thankfully they at least seem to have HMS knowledge) to write to the obstetrician with some HMS info ? or ask them if they know a knowing obstetrician?
and/or send him a copy of the info you have and maybe ask at the HMSA what else they may have and send that too-
and maybe also the general info from the DWP (department of works and pension) re HMS and poss disability
(which amongst other things clearly states that pain and even chronic pain syndrome can be part of it - )
http://www.dwp.gov.uk/publications/spec ... -syndrome/

and I bet... he has had patients with spd and in quite a few of them the spd probs will have come from hypermobility and some will probably even have had HMS... he will just not have understood/noticed this
(there's even a famous person, mylene class (?) who had bad spd probs due to hypermobility and there was an article in one of the papers)

must admit for me now... sending HMS info to unknowing, disbelieving, arrogant med bods is not only "a good deed for all HMSers" but also 'having the last laugh" and a kind of "revenge"
even if I never see them again I imagine seeing at least 'doubt of their own knowledge' on their faces...

best of luck and keep us informed how things progress!
xxg

[christianne]

Hi Steph,
Welcome to the message boards! and a big hug to you.

Great helpful post by Gila there. I just want to add my sympathy and say you are certainly not alone. My second daughter is now 31 weeks but has been in severe pain with the spd and HMS for weeks, she had to give up work at around 14 weeks. She has worse pain then before the pregnancy in all her other joints too,we think it is the pregnancy hormones like elastin (sp?) coming into the body to make it stretchy and loose ready for the birth, which is needed in 'normal' pregnant women but in our case makes us even more loose and hypermobile than before.

Your experience with the obstetrician is, sadly, not rare. You can ask to change consultants. I find that if we say our diagnosis is Ehlers Danlos syndrome type 3 to medics they react more than if we say HMS, so that could well be worth trying - most of the specialists now seem to say that HMS is equivalent to EDS 3 or HEDS, and BJHS(benign joint hypermobility syndrome), they are all one and the same thing, but because more doctors have heard of EDS (because of the more severe types like type 4), they have a better understanding of it and are more aware that it could cause difficulties.

When I went to the obstetrician with my eldest daughter for her two kids and then with my second daughter we went armed with leaflets, booklets and articles relevant to HMS/EDS and pregnancy which we ordered or cut out from the HMSA and EDS group websites and newsletters. These then were put into the notes that you carry everywhere with you.

I hope you start to feel better and that you get somewhere with the next consultant appointment. Can you take someone wth you who knows about HMS and is tough enough to stand no nonsense form the doctor? Can your GP also write a letter outlining your problems that will help the obstetrician take more notice? (if it isn't possible to change consultant - however you should be able to - it is your right to do so).

Good luck and lots of sympathy
Christianne

[weirdartist]

Is there any useful treatment during pregnancy for SPD? I've been on crutches for about 6weeks now, and I'm literally getting worse every day, its so depressing. I have been told by physio to keep doing the recommended exercises (pelvis floors and gently keeping the pelvis mobile) and pretty much discharged she suggested going to a swimming pool and relaxing in the water but even though I was careful keeping knees together and not doing much I think if anything it made things worse, besides being unable to drive I can't get to a pool now, wheat bags and warm baths are about all I have left (the prescription I have been given is all I have been told I am allowed, and I will have to stop taking it in 3weeks time, it doesn't do anything that I can tell). I'm 33weeks now and just don't know what to do :'(

[christianne]

Hi
Weird artist, I am sorry you are having a rotten time, and send you sympathy. If you read through the thread there will be some useful info on things that may help, but for a start you could try a pelvic support band, like a girdle that helps stabilise the pelvis. You obviously already know about keeping your knees together when getting up or sitting down. getting into a bed or a car etc.

I just thought I would also add to this thread too to say that those of you with spd, if you are very immobile (not walking about much at all or wheelchair bound) it is worth asking your consultant whether you should be on blood thinners. My daughter was in a wheelchair with spd for 10 weeks and for the last 6 weeks needed to inject herself with a blood thinner (klexane) daily to prevent clots (which apparently you are more at risk of if pregnant and immobile). Of course this might not be the case for everyone and it is important to ask your own consultant, as they may vary in their advice and it may be different for different cases.

The good news for my family is that my daughter had a lovely little boy 6 weeks ago and is doing well, breastfeeding, and her pain levels have gone down massively now the baby is born. So that is hopefully encouraging to all of you who are suffering as she did. Good luck all of you!

Christianne

[Laura]

HI Weird Artist

There's a book called Relieving Pelvic Pain - During and After Pregnancy by Cecile Rost, which is supposed to be pretty good. It basically offers you series of exercises to do that will prevent and/or ease the symptoms of SPD. I'm not pregnant yet myself and hence haven't got/had SPD, so I don't know whether it works in practise.

Laura

[NinnyNoodleNoo]

Bearing in mind that even without HMS, SPD/PGP can cause horrible pain, there is pain-relief available. Of course it's not ideal, how would it ever be ideal, but it is there. Whilst pregnant with my 2nd and in hospital for weeks (unable to stand, let alone anything else) the pain was so horrible they gave me pethidine a few times. In my intro I've said how I try to avoid painkillers, but I ended up on them pretty much constantly for the final 8 weeks of that pregnancy.

For those people who've had physio in pregnancy, been discharged and are still in pain, it might be worth seeing if you can get a re-referral.

[roqchiq]

I'm now 36 weeks and the SPD is getting bad. Am pretty mobile around the house but struggle to walk very far outside. Both physio and I are reluctant to put me on crutches in case I strain my shoulders! As above, wheat bags seem the best bet, although baths are out for me, they're just too uncomfortable so I'm sticking to showers - a jet of hot water on my SI joint is lovely!

Anyway, a little feedback on the book mentioned above: Relieving Pelvic Pain - During and After Pregnancy by Cecile Rost. I decided to get a copy and found it very interesting. I'm a little dubious about the exercises she recommends though. It's not always clear which ones are OK to do through pregnancy as opposed to afterwards, plus some of the exercises may not be suitable for pwHMS: I discussed them with my physio who suggested some that would suit me better. Definitely worth a read though.