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!

Can you see a private osteopath or someone who can do manual manipulation?

It’s boiling here! Though looks like raining in few days so can’t complain. Least can whizz through the washing faster. How is everyone holding up?

It's boiling! I was pouring with sweat pushing the pram today 😰

My back is really achy and I can feel the facet inflammation is coming back I'm so gutted. But I'm still doing my strength training and trying to stay positive. It's not bad enough for pain relief yet.

Great on the keeping positive well done. I don’t miss pushing prams up hill in the heat!

Akire I totally agree about body not quite getting the sunny day message in time with others.

doadeer Hope you're doing ok. I'm near Whitley Bay.

Headache here there is a storm brewing soon the Change in pressure aways gets me. Good to see few new threads here in our shiny new topic. But quite few have been started then no one has come back.

If you read these but don’t often post give us a wave. It seems very quiet after all our campaign for this section!

It’s boiling here and having a grumpy medium Level pain nothing to moan to much about but arghhhhhh fed up.

Trying to eliminate some stuff from diet to see if help so not having lovely things isn’t helping either.

Just had a call from the hospital postponing my surgery by a week, I am really upset, I have been rushing around trying to get organised and a lot of arrangements I had altered have now got to be moved again 😔

Hope everyone is coping with the heat, my asthma is very bad with the pollen as well and I have had to have steroid tablets.

Oh no I’m sorry @Evenstar did they give you a new date yet? I’ve not been out much so asthma not been to bad luckily.

@Akire they have, only a week delay, but my husband has to go and get our son from college just after the new date so I will be on my own sooner than I would like, and we are going on holiday 12 days afterwards so I won’t be as far on as I had hoped.

I have got a second hand wheelchair as I knew I wouldn’t be able to walk far, and the family are happy to push me round, but will still be at the stage of needing the foot elevated most of the time and it doesn’t have a leg rest.

I felt I must accept the date as it feels so uncertain if and when you would get another under the current circumstances.

That is a shame. I know Red Cross hire chairs but doubt have leg rests. Is it well known brand? You can get foot rests that elevate for each brand but it is extra expenses. But if it makes difference between going out or not. I’m happy have look if you know brand of chair.

Thank you @Akire I am going out to have a look for a label later, it looks straightforward if you know the brand, but I would appreciate advice if it does turn out to be tricky.

Currently trying to arrange for the pet sitter to come in and out and look after the animals whilst DH is doing the college run.

Very hot in london, my flat is boiling.
I'm so sore now, I mean pain levels still a 3 which is manageable obviously but I'm just dreading it increasing. I've the tired haze again which I've had when the inflammation is bad.
Booked an appointment next week with consultant. This last procedure was supposed to last a year! 😢

Hi all. Just wanting to say a quick hello and hoping everyone is managing best they can in the heat. I'm the same as you Akire medium level pain and bamboozled by diet restrictions (sometimes I can tolerate x then other times I can't) I had a quinoa stir fry the other night and it made me totally ill. Apparently it should be a safe food, nope not for me. Are any of you in any helpful Facebook groups. My main support comes from Ehlers-Danlos support UK.
Hugs and to you all.

@doadeer that's so rubbish. It's hard when the things that are supposed to last long term don't work for long. My EDS means most stuff doesn't work for me.

I'm seeing a new rhematologist next month wonder if he will have any insight. I know I have hypermobility through some joints but only now am I starting to think it really impacts my life. I'm finding it so hard to build muscle, I get really tired... My bruising is awful. What are your EDS symptoms?

Sorry to hear the heat is so bad @doadeer, they were talking on the news about the problem of flats overheating in London and the need to get our homes ready for climate change.

I have joined UK Fibromyalgia Private Group on Facebook which is quite good and subscribed to Fibromyalgia Magazine. I am still waiting for confirmation that I actually have it though, as I had a rheumatology referral in February and haven’t heard anything yet.

@doadeer my first Rheumatologist was private and was awful. Dismissive and matter of fact. I got my diagnosis by an NHS Rheumatologist just last month. 6 days before my 50th birthday. I either react badly to certain meds / procedures or they simply don't work for me. I'm attaching a couple of pics from a leaflet that the Hypermobility Syndromes Association sent me. They sum up the generic symptoms. There are always variations and co-morbidities so everyone is different. Let me know if anything rings a bell with you as I'm happy to chat. Always good to talk to people who have similar issues.

@Evenstar I have some friends who have Fibromyalgia, and as a result of being a Sports Therapist and trying to help them (before I became unable to) I joined a Fibro FB group. I genuinely believe that a lot of people are misdiagnosed with Fibro and possibly have Ehlers-Danlos syndrome

@RainbowZebraWarrior that’s interesting I will certainly do some reading, would that be something rheumatology would look into to exclude it? I do know someone with EDS, but don’t know much about the symptoms to look for or how it affects you.

@Evenstar, yes Rheumatology are the first port of call for EDS diagnosis - there's a lot of new info out there now. Worth looking online for the EDS toolkit. Write all your symptoms down. Once diagnosed correctly then they usually refer to specialist physio, Occ Health, Cardiology, Gastro, Neuro etc

Thank you @RainbowZebraWarrior
I have loads of those. I didn't even know they were connected. Outside of the obvious ones... I have awful spacial awareness, I'm constantly bruised and scared and anesthetic is very slow for me and I need lots.

This new Dr is a specialist in this field so let's see what he thinks. And seeing my back doctor next week about why on earth my nerves have fused back after such a short time 🙄

How did you get on with the wheelchair?
Just in bed watching day time tv which is depressing in itself. All the charity adverts every 10min feel like I’m entirely responsible for clean water, blindness, vaccines, pet charity going. I know they need to advertise but it gets to you when it’s wall to wall every day!

DH went out and had a look last night, it seems to be American and not a make that is sold here. We are thinking that the best thing might be to take it with us to a shop as they might suggest a leg rest that would fit based on the measurements.

I am planning to sell it on after using it, so didn’t really want to spend a lot. Where we are going is £55 a day 😮 to rent a mobility scooter, so £50 on Gumtree for a brand new wheelchair with wrapping still on the wheels seemed a good deal, it had come from a house clearance. I wouldn’t need to keep my leg up so much if I had my original surgery date.

Totally agree about the adverts really depressing.

I hope that works out for you. I hope you have a decent cushion!