CHRONIC PAIN - share your moans and achievements

[doadeer]

Hello,

This thread is to share the day to day... The moans, rants, fears, anger of day to day living with pain... And let's be positive where we can too... Little or big achievements.

I've had a tough day with my grumpy toddler who is obsessed with biting, he made my shoulder bleed today 😢

On the plus side, had a great pilates class and managed some tricky stuff despite feeling exhausted... I couldn't have done it unless my teacher was on Zoom telling me to hold it!

Hello, how's everyone doing this week?

I had a horrid week. Tmi but had horrendous bowels all last week, surprised I'm not a size 6 now! Then I had a migraine on thrs, the horrible ones. 🙄 I had to cancel my botox on Friday (for my back not face lol) because I'd had contact with a covid positive person. But I've done tests and I'm negative.

Anyway... These patches they gave me with local anesthetic are good! I'm definately seeing an improvement in my pain and energy levels. Shame they are so expensive

Doing OK here, but waiting to hear from the hospital, as my foot needs reviewing but the consultant is taking annual leave and said it could wait till 7 September. I am stuck with a surgical shoe and not allowed to weight bear without it so don’t fancy waiting an extra month for that. They rang me to tell me this in the evening after I had been to the clinic.

At their suggestion I rang the consultant’s secretary and she said “I will speak to someone, but I don’t know who”, she also said there were no appointments till September (which I had just told her 🤯) which must mean there is no cover.

I have also had my neurology referral refused for my hemiplegic migraines, but I am OK with that as I had scans etc and my GP really just wanted to know about prescribing anything if they get worse. They have said to just follow national guidelines so hoping that won’t be needed.

@doadeer sorry to hear the tummy trouble was still bothering you but good that you are having some relief from the back pain.

@Akire hope your weekend has been OK and you are getting acclimatised to the light

Hi guys. Not best weekend still lot pain pelvic bowel issues. Not horrific but it’s enough to stop you doing anything or being able watch a film and switch off.

Why did they let you have foot op knowing no review time for 2months later than you need??? How are you going manage?

Sorry about migraine they are the pits. Many a times I would have gladly shot myself in the head if there was a gun nearby. I once had to drag myself across landing to nearby flat because couldn’t lift my head off floor enough reach my phone and then lay on landing Till someone found me and called 999. People have no idea or the pain.

How is everyone? I’m so annoyed still trying sort Sky TV as not had any tV for over 3 weeks. Got a really good deal. But getting my housing association to find the person with the key to some mystical cupboard is proving a task to far.

So frustrating. I don’t want access tomorrow but it’s 10-12 days wait till make a free appointment. Just had out of office reply finally saying she back on 12th Aug. But even if they contact me the first day back (ha ha ha) talking 23rd Aug. And 7 weeks to get a cupboard key really is beyond. Part of their job is over seeing community issues it’s not like it’s a special favour. So looks like I’m cancelling second Installation appointment for this week. It’s not helping my mood. Tv and radio are only things can do!

That’s really not good enough is it, not that there is much on TV at the moment.

I haven’t heard from the hospital about an earlier appointment for my review, so I guess I will have to ring them again.

Morning all happy Monday. Yes still no TV news they are beyond honestly. The amount of office staff they have and do so little. Perhaps spent less time producing glossy magazines to tell us how wonderful they are. Oh look we have best kept garden prizes. Yea we have no outside space and weeds 4foot tall growing out of pavement you can’t even Maintance that.

When I suggest a year ago they put up a please wear mask in the tiny lift sign they said we can’t as not legally enforceable well no but it’s tiny sealed metal square on tiny sealed unventilated landings a hint would be helpful!

Having another awful period after Gp put me on the mill pill. She said this will stop them great I thought. Of course on researching only stop 2/10 and 4/10 have normal and 4/10 have irregular periods and spotting. Not quite what I was promised!

Morning lovely.

I love my mini pill. Haven't had a period in 5 years on it! I don't have any pre existing issues though.

Pissed off today as I asked my GP to up cocodamol to the 30mg but they refused. I'm struggling to sleep with the pains in my feet, work is mental again and I'm just bloody exhausted. The only time I'm not in pain is when I'm in the bath.

New wheelchair delivered today and it's incredibly comfortable. I really need DH to get some weights out of the garage though as I need more arm strength to get about! I'm a bit rubbish with it still and can't get around very well. It's a pain relying on being pushed all the time!

30mg if codine is hardly anything. I have some for bad periods although only take if about to pass out as you know what like about giving it.

5y no periods you lucky devil. I haven’t flooded yet which is quite novel for me so guess better than nothing.

Top off start to week now stuck at home 7 days as wheelchair making clunking noise from back wheel. Bearing?who knows but as not official stranded (yet) so it’s 7 days to get someone to look at it. Always something. They didn’t ask if I was work or had kids look after just it’s NHS provision so just be bloody grateful type of attitude.

Been reading the new national disability strategy and it’s hopeless. More get people with long term conditions back to work as if such easy fixable solution. Even if society was fully equipped and no obstacles living with ill health and u predicable pain and fatigue is really hard work as we all know. Most of us who have left work did because we couldn’t carry on not some moral failing on our behalf.

I have emailed PALS tonight as the consultant’s secretary hasn’t phoned me. I am suffering with my back and pelvis now I am moving around more as with the built up shoe I am lopsided.

Sorry you having rough time Evenstar. There is never good time to be chronically in pain but covid has not helped in the slightest.

Thank you, I am all right, just worried that I am heading for another flare with the fibromyalgia and I was feeling better before the surgery.

Never ending isn’t it. Glad you felt up to contact PALS it’s just so hard constant ask and fight for what should be done as matter of course.

Thanks for this.

Today's moan is the good work an osteopath did on double shoulder impingement & neck injury is wearing off & I have "toothache" in both arms from closing a bloody window 😣

The good news is, I'm finally double jabbed after a total palaver, so I can now see the osteopath again 🙏😆

Pain is so bad tonight it has me in tears. I've been struggling with hip pain for a while, it got worse and worse last week on holiday. Tried to get a GP appointment yesterday but they wouldn't give me one and said it has to be the physiotherapist not the GP. I had a phone consultation with him today, answered lots of questions, he thinks everything is pointing to osteoarthritis, but there are a couple of other things it could be. I've to get physio for 2-3 months before being referred on to anyone else. It's getting me down so much, I'm just not coping with the pain. I can hardly get around, can't keep the house nice (DH is amazing with that but I feel so useless)....can't put my socks on or walk up the stairs or do anything fun with DC. And the pain tonight is absolutely excruciating because he had me trying things to see how much movement i have. I just suppose I feel really down at the thought of all this pain and physio. I'm really struggling now with the pain.

Welcome Glitterblue and SonginginShithouse fab name! Unless you have been here before in which case welcome back!

Seems silly have Physio for months when it’s something that could be made worse by movement and need treatment. Did they tell you how long you have to wait for first appointment?

The toothache in bones is so real isn’t it I get it from time to time.

I’m still in wheelchair chair jail as NHS power chair making loud crunchy dragging sounds in one wheel. It can’t see me for a week. Unless I actually breakdown then it’s an emergency breakdown. So far we are still going very loudly and slowly.

My feet have been driving me mad these last few days! The pains and pins and needles are unbearable. Amitryptaline is officially doing sweet FA and they won't give me anything stronger than 15mg codeine.

I'm meant to be doing nerve therapy as directed by the neuro rehab team but I just can't beat anything touching them. I can't sleep because my feet touching the mattress feels like someone is driving nails into them.

On the plus side my lovely garden is finally finished after DH started it in April 2020 after I got the professionals in. And I have ramps :)

And I have a lovely shiny new wheelchair with a very comfy cushion and can get rid of my old knackered second hand one that kept breaking!

Keep on keeping on everyone!

@Akire would you be able to manage short term with a manual one? We always have people giving them away on local Facebook groups. I'm gifting my old one for someone who can repair but I'm definitely too far away from you 😂

I have got a old Manuel for the odd time
I go in anyone’s car but can’t push self far. Have tiny flat so can manage but can’t go down hallway or take rubbish out or get post etc. Least with power chair I have one spare hand to carry a drink or lift things.

That’s not fair @Akire, they should consider people’s circumstances, if you can’t get out or even get rid of rubbish then you should be a priority for repairs.

Other people may be in a situation where they have a lot more help or different accommodation so it isn’t such a problem.

They never have enough people so if you still moving it’s not top of list. Just adds more days a year to wait for service or repair or new parts like you don’t have life to lead.

To make matters worse just fell in the shower off the shower chair. Not far but flat on bottom so waiting for back neck pain to hit in. So if chair breaks I not be able push self if back neck in pain. Honestly it’s beyond!

@Akire

They never have enough people so if you still moving it’s not top of list. Just adds more days a year to wait for service or repair or new parts like you don’t have life to lead.

To make matters worse just fell in the shower off the shower chair. Not far but flat on bottom so waiting for back neck pain to hit in. So if chair breaks I not be able push self if back neck in pain. Honestly it’s beyond!

Oh love 😢 that's not good! I really feel for you x

Thanks I mean don’t have to do anything for rest of week but still like bend occasionally! Still I suppose if it does get bad and I can’t go out for week least in stuck in for 2 reasons at once….logical in there somewhere!

Have you been out in ramps to garden yet?

Not yet. I've got to give it until tomorrow for the concrete to set properly on the first ramp before I can try it out :) it looks very grey and industrial at the moment but we are going to paint the grey walls an olive green, get some colourful pots with bee bombs in there and install the hot tub and gazebo :)

Added a couple of before pics. Will add the afters in a tic

After :)