Coping with pain but having to Get On With Things...anyone in a similar position?

[popsycal]

I have been diagnosed with a condition that means I suffer from underlying pain in my muscles and soft tissue. It doesnt go away and it regularly becomes extremely painful. It kept me awakemost of the night last night.

Today I still had to go to work and tomorrow I will still have to be a normal mum.

HOw do you cope both physically and mentally with this? The condition varies from person to person but can be chronic, persistant and in some cases, debilitating.

Sorry popsy - no personal experience here. My mum suffers from chronic pain (degenerative disc disease) and I know it really gets her down. Can you be referred to a pain clinic?

Don't suppose you're getting out runners out much now either?

I'm in a similar situation (although different condition) and also finding it really difficult. I've been prescribed painkillers but i daren't take them when my DS is awake. At least I know that there's a cure for mine ultimatley, as i'm on the waiting list for surgery. Can't offer much in the way of advice as i'm struggling myself, but you have my sympathy.

saggars - apparently,gentleexercise,buildingup very slowly canhelp alot. I would LOVE to be running....I got a lot out of it. I amnow almost certain that the knee and shinpain I had all those months ago was nothing to do with running but the startof all of this brought on by a sudden increase in activity levels.

black31cat - do you mind me asking whatit is that you suffer from?

I was so p'd off last night that at4am, I got up and wrote an email to ds2;s sleep consultant demanding thathe do something about ds2;s sleep and exaplaing how it had impacted on our lives for 3 years.

Luckily i had the sense to write it in Word andnotto emailit n thr middleof the night

sorry - keyboard is cack

Hi,
I am in a similar position (SPD - got a thread on here at the mo), and find it extremely hard going.

The painkillers which help make me feel very sick, and drowsy (I sleep well on them!).

Physically it is very hard going, mentally I find even harder. Have you got a dp to talk to? I find talking about it to my dh (about the pain, not beng able to cope during the day etc) helpful.

You just Do, pops unfortunately, I found it hard at first, and have been up by 4 most nights for the last two weeks.

I guess I'm to bloody minded to let it take over my mind like it does my body,

Some days are worse than others, and some days are a lot better than others.

Sorting out his sleep would be a massive help to you popsy. Can you get a second opinion on him to see if someone else will do his adenoids?

ds2 was the incredible non-sleeping child (not just not sleeping but literally taking the house apart during the night) he was a different child after adenoids and tonsils came out.

Hi shosh

I ampretty bloody minded too
they wanted to send me homefromworktoday but Ihave dreadful classes on a tuesday and I amdetermined to 'crack' them

I ougt to go to bed but I would not be able to sleep

I am waiting for a rheumatologist appointmenr which i wil case up tomorrow

saggar i amactually going to revise the ;middle of the night' emailandsendit tothe consultant

I know of 4 children whose sleep and life was so different after surgery
ds2's behaviour is deterioratingtoo and he is havng intermittant hearing problems

I do think a positive approach helps, I actually find it easier if I have something to do, I am a Cm with 7 kids in the house (three under 22 months all day) and just keep going when they are here.

In the evenings I try and either do paperwork, or Family tree.

Weekends is the time I find harder, as have no children living at home now, do find that not having a lot to do then you feel every ache.

I seem to go into overdrive as well when like this and only sleep 4/5 hours a night for weeks at a time then the exhaustion hits me and all i want to do is sleep.

I do find that hormones don't help, I at menstruation time and just before the pain is always worse.

I am still trying to work out what helps and what makes things worse. I do think though that if I could sort out ds2that things would be easier.

I have to keep working.I only work 2 days and by the end of Tuesday, I amabsolutely shattered, But I have to keep working

Ds had his tonsils adenoids and grommets done at 2, before that you could here him snoring from the same room, and was awake at least three times a night, he definitely slept better after.

Popsy - its horrid when pain keeps you awake. The tiredness the next day makes it even harder to cope with the pain. I think its just a matter of trying to find space and quiet for yourself to rest whenever you can. Also there is no shame at all in letting people know how you are at the moment. Go back to the doctor if its possible and let them know how challanging it is for you.

Am having a bad flare of psoriatic arthritis at the moment. I think some people I know think 'oh arthritis - dodgy joints, get on with it blah blah' They dont realise how everything aches and how tired I am, how somedays even a small task seems like a mountain. Even though I've got the pain more under control this week, the deep exhaustion is still there. And life goes on, ridiculously busy time which I have to tackle at half speed.

Had an embarrassing moment last week. A friend was really relying on me to look after her toddler for the day. I had to take him with me in the pushchair on the school run. on the way home out of school I just could not get him over a kerb He had fallen asleep so I couldnt get him out. Try as I might I just physically couldnt do it and we were stuck in the road. A friend spotted me and had to push him home and it to the house for me

Any way, I hope you are feeling better soon and that you find some things that work for you.

I know this is very tough, I think you have to be kind to yourself, make life as easy for yourself as possible. I find it is all much harder when you I am stressed. I cope less well with the pain, the pain gets me more stressed, and it becomes a spiral.

Have you got as much help as you can at home? Are you eligible for DLA or some such. If you can get some extra money then you can pay for someone to do the household chores, saving up your personal resources for the kids.

I get DLA and Direct Payments from local Social Services, so that I have a cleaner 3 times a week, and a mother's help who does school pickup and makes tea once or twice a week.

If your pain is constant, and affecting your sleep, ask your GP/Consultant for referral to a pain management clinic. Often the practicalities of living with pain pass the professionals by.

Good luck, you have my sympathies.