Any other mummies out there with chronic pain illnesses?

[Tee2072]

and would they like to have a support thread with me?

I have fibromyaglia, arthritis and early degenerative disease so pain is my constant friend.

I also have an 11 month old son.

Anyone else in a similar situation and would like to have thread for support and recommendations for coping strategies?

Glad you had a better day Tee.

I've been swimming today - not for long but feel pleased as I do feel guilty for not taking more exercise. Walking especially I avoid as I know it'll hurt. Took my DS to the park and that made my back hurt but it wasn't a bad day overall.

My DS slept in till nearly 7 today too, which is a good half hour on from normal, so I have done pretty well.

I'm so pleased you have had more replies

How are you today?

Not generally but today I have had a hideous flare up of IBS which sends my intensines into spasm and leaves me doubled over in pain.

I hated not being able to do stuff that I take for granted normally that I take my hat off to all of you who live with pain on a daily basis - I don't know how you cope.

Hi everyone,
Thanks Tee for starting this thread. I have psoriatic arthritis, mainly in hands, wrists, feet and ankles. I also have 8 month old twin boys who I love more than life itself.

I would love to have a place to chat about how it is. Like Riven, I feel the near constant pain makes me a tetchy mum, though I try not to show it, and an even more tetchy wife. I have a wonderful DH and I feel guilty that I don't 'pull my weight'.

My current dilemma is that I am still bf my boys, which means a) I can't take the methotrexate my rheumatologist has recommended and b) I am now really struggling to lift the boys out for their night feeds - just how crap a mother do I feel when I can't lift up my own babies? Do I give up bf (which I really enjoy) to take the drugs? Or do I keep bf and keep putting up with the pain for now?

Sorry to vent - feels good to be amongst friends who understand.

Meeeeeeeeeeeeeeee. I have Spina Bifida and a 5 year old and 2 year old. My poor DH had to give up work to help care for me. My back kills me daily and my right leg is pretty buggered so hurts a lot too. I don't sleep well because of the pain and don't fall asleep until exhaustion hits and by then it's time for my boys to get up! Thankfully DH looks after them in the mornings letting me get SOME sleep or I'd be the most grumpy mother known to man.

Hi all,

Its nice to know there are other people out there managing pain and children. I'd still love to be in the thread.

Riven I recognise tetchy mum....I think I am that all the time. Pain seems to reduce capacity to manage what everyone else seems to find easy.

Bosoms I can relate to your dilemma. I had to give up breastfeeding both DC at 3 months as I could not function without meds, methotrexate being one of them. I had no choice as I couldn't walk, dress myself etc, never mind pick up a baby. It broke my heart....still feel sad about it now......but I want to be as well as possible in the long term so I know I had no choice and pain for me means more joint damage and loss of movement down the line. Have you asked about alternatives to methotrexate? Even just increased steroids for a short period of time?

Good day today for a grumpy mother IYSWIM! Hope its been as good as possible for everyone else!

Good morning all.

I, personally, feel not too bad today. Adam, my son, woke up at 4, which is when I was just falling back to sleep after insomnia at 230! So I brought him into bed with me and we both slept until nearly 7!

On top of my physical issues, I also have Anxiety Disorder, Borderline Agoraphobia and Clinical Depression. Yeah, I'm a mess!! Oh, and did I mention? Type II Diabetes...

Anyway, I too can be a tetchy mummy and wife. Its so hard to be pleasant when you hurt! My DH is wonderful with helping when he's home, but he does have a full time job!

Bosoms what a hard decision! I can't really relate to it as my milk never came in, so Adam's been a formula baby from the start. I do understand too much pain to pick him up though!

I'm sorry to hear of all the problems you are having.

I have chronic pain too but mine has only worsened in the past couple of years and my children are older (10 and 7).

I have spina bifida occulta with tethered spinal cord which causes nerve pain and other problems from my waist down. I have been on Gabapentin, Pregabalin, Oxynorm and Oxycontin at various times. I am now medication free (except occasional over the counter things - and a theraputic dose of chocolate ) and depend on heat treatment, TENS and self-hypnotic and visualisation techniques as well as regular swimming and walking.

I know it sounds odd but the hypnotic and visualisation stuff is what I learned for hypnobirthing. There are days when the pain gets overwhelming but I mostly have it bearable. I'm not sure I could have done these techniques with a small child as they don't understand that Mummy needs to go rest for 15 minutes but I hope they offer you an idea of a tool for the future.

Morning all!

Glad you feel OK this morning Tee. My DH has type 2 diabetes so I'm familiar with that.

Bosoms, I can relate to the emotional upset of this as I am still bfing my 16 month old (wake up and bedtime only) against (questionable) medical advice. I have osteopaenia (borderline osteoporosis) and was told last year by my consultant that I should have stopped at 3 months - apparently they 'tell all their patients that' - must have missed me out, but I'm not really sorry they didn't as by the time she told me this I was determined to carry on at least for a while longer. She didn't explain the reasoning of it to me at all, and wasn't up to date on my medical history and recent issues, and I felt really patronised and upset afterwards and decided that I didn't trust her judgement given her ignorance of my situation so have carried on. I am lucky in that it hasn't affected the medications I take, and my other doctors who I see for other conditions are good, but the whole experience made me feel awful. I have my next appointment in a month and will see what gets said at that.
Mumghiskhan - I wasn't in your position and could at least do day to day. That must have been very hard.

MuminBeds I'm in awe of your strategies for managing the pain. How often do you swim/walk for this to make a difference?

My DS has been a delight this morning and is now in nursery. I must get some work done Have a good day everyone.

Hello, can I join?

I have Ehlers Danlos syndrome (joint hypermobility syndrome) and have constant pain in, well, all my joints, though some are worse than others - hips, spine, neck, shoulders are the worst. I did a pain management course about 8 years ago - pre-dc - but have found it's all got a lot worse with each pregnancy and, unsurprisingly, looking after a toddler and a baby.

I'm feeling a bit upset today as I've had to cancel a physio session as my childcare has fallen through. This is one of the things I'm finding very hard at the moment: I know that, for example, Pilates or massage would help a bit, but just don't have the opportunity to go! DH is great, but he can't breastfeed...

So much for feeling okay today. Went to do some shopping at city centre and a.) all the stores were like 10 degrees too warm and b.) really crowded so I had a panic attack. Came home, fed the baby, put him in his playpen and sat and cried.

Now I've eaten a ton of crap food. sigh so much for Weight Watchers today.

Welcome maranello. I have the same issue with childcare and getting to exercise etc. Hopefully putting A into day nursery 2 mornings a week will help with this.

I'd like to say (in a non-patronising way) that I'm in awe of all of you and what you have to cope with daily.

Good to hear there are some things that can help - Muminbeds, would you mind expanding on the hypnotic and visualisation techniques?

I've often wondered if this could help me, but am wary of spending yet another wodge of cash on yet another therapy that might not be of any use to me.

Sorry to hear about your bad experience Tee - that must have been awful.

Hi Tee! I'm so glad others have come along to chat! They will be so much more help than me! However I'm so sorry that all of you have so much to cope with.

Good luck and I hope you end up glad that you started this thread.

Sorry your day went downhill Tee. A couple of mornings at nursery a week sounds like a good plan to give you a bit more time for you. It is hard when they are so little and need constant attention.

I am off to bed now, knackered as was talked at for ages by a window salesman earlier. Hope everyone has a decent day tomorrow.

Good morning all,

EightiesChick I'm sorry you feel your consultant doesn't understand your condition, it is great that you are taking charge of it yourself though. I don't swim as often as I'd like, that is only every couple of weeks due to time constraints but I walk daily for between 30 and 90 mins. I was on wheels for a part of last year so I went for a roll instead, not usually for as long though.

Maranello Sorry to hear you had to miss your physio. Is there any way that it can be arranged for your physio to come to you? I have a friend with EDS and she always found she was worse during pregnancy and postnatal due to the relaxin but did improve a bit after.

Tee Sorry things went downhill for you. The heat can be oppressive in shopping centres. I hope today is easier for you although it feels like another hot one!

PerpetualSupper It varies depending on how I am feeling but for the main part it is focussing on the pain, acknowledging what kind and how intense it is and how it makes me feel, then I imagine the pain as a bit less and how I'd feel to that pain level and focus on that a while, then a bit lower and so on until I feel it is a level I can cope with. Other times when I just need a bit of a boost I picture myself sitting in the shade of a tree in a forest (my fave place to be) and visualise the breeze and the forest smells washing over me. Before paying out a lot of money maybe a book or CD (or MP3 download) would be a good place to start to see if it is something you find helpful? I don't know but I would imagine a library might have access to some.

Whelk You sound very kind.

I know the things I do sound very flakey and they don't always work but they do help me. I don't think I would have been able to have jumped in with the more intense pain I've had, I started doing this when my pain was mainly managed with drugs and I was just getting some breakthrough pain and I spent 7 weeks in hospital last summer so had masses of time when my only job was getting better so (in an odd way) I feel blessed having that time to learn.

Hi gang.

Sorry been AWOL today. Had blood drawn and shopping this morning and son decided that napping was for the weak all afternoon.

Feeling a bit better today after taking a nice long walk. Exercise does help a lot.

mums I think that sound brilliant and may give it a try. Back when I got migraines I used to be able to 'kill' them with meditation. Its never occurred to me to try it for this!

I think I'll try that Mums - will definitely look into online resorces as well.

I've also tried meditation (sort of) to help with sleep ishoos in the past - makes sense that you could use it for pain management as well.

Tees, I did a course in Butetko breathing a few years ago, and the instructor showed us a technique he swore could be used to avert a panic attack - in fact, it's the one I now use to go to sleep.

I think there's a book on Amazon which explains it, or if you like I'll try and summarize it for you.

ourlady The problem I usually have with 'techniques' to avert a panic attack is that by the time I think to use them, I'm panic attacking! Or they take too long.

But sure, go ahead and summarize!

Okay (won't say take a deep breath as that's precisely what you shouldn't do).

First, take two smallish, normal breaths in and out (always through your nose, mouth closed).
Hold on the 'outbreath' for one second, before taking two more small breaths.

On the next 'outbreath' count to two, and keep repeating this up to a count of ten seconds - you'll find your breaths need to get slightly deeper in order to hold for the full ten, but you should never be taking huge gulps of air.

When you get to ten, reverse the process, so you count to nine, then eight and so on back down to one.

As I said, I use it to get to sleep, and it's especially useful when DH's -snores-- wake me up I wake up in the middle of the night, but the instructor insisted he'd helped a woman come down from a full-blown panic attack by talking her through this method.

I can see that helping to come down from one. But not preventing one! But I'll keep it in mind.

Thanks.

I hope everyone is having a restful and more or less pain free weekend!

Hi Tee!

It's been a great day today - have been able to stay off the painkillers and get lots of jobs done!

Hope you've had a good weekend too

Hello, just thought I'd join the thread. I'm a single mum of 2 boys aged 3.11 and 2.2 and I have HMS (hypermobile joint syndrome) and Fibromyalgia.Luckily mine seems to have been primarily in remission since I had my youngest.

Hi Tee and everyone else
Sorry I haven't really posted since I joined the thread. Hope you had a good weekend, the sunshine always helps me.

Short post but I'm off to bed, as I need to be much stricter on getting more sleep and helping myself and therefore my achey joints.
Night night all

Good morning all.

I have woken up absolutely exhausted today, almost like I didn't get a baby who slept through. DH is off to see the doctor and then may take the rest of the day off...which would be brilliant!

Welcome smokinaces! Glad you have you with us. Well, not glad due to the point of the thread, as I would wish chronic pain on anyone, but you know what I mean!!

freezing I am amazed you were awake that long! I am usually sound asleep by 930, 10 at the latest! If Adam is being especially difficult, sometimes even before him, thanks to my husband who is wonderful.

Quiet day around here, I think. I need to get some work done on a piece I am writing for a web site and some other bits and bobs, but other than that? TV TIME!!!

Have a good one everyone.