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Chronic pain

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Original poster

CHRONIC PAIN - share your moans and achievements

983 replies

doadeer · 10/03/2021 16:50

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!

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12
DuckWithOneWing · 29/04/2021 21:30

Today is a sad day. I've realised I'm not going to be able to drive again (well, definitely not for a while) so I've put my car up for sale.

Welcome @TheTempest! It's nice to have you, even though I wish none of us needed to be.

Akire · 29/04/2021 23:13

That is sad, I felt the same money moons ago. But better to sell and use money than let car lose money just sitting there

How’s had everyone’s day gone?

Navilana · 30/04/2021 01:43

I only now found the new thread Shock I'll read up and then come back! Hope everyone is keeping well, with only mild aches Flowers

Original poster
doadeer · 30/04/2021 17:54

Hi @TheTempest welcome!

I also have damaged facet joints. I went for a radioactive scan today to see how my bones and joints look 3D!

Are you managing to get any treatment?

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Akire · 30/04/2021 18:24

I’ve had few niggling old problems nothing to have me swinging of the walls but it is depressing. Be nice if it came with a pain level and time card so you knew where you are and what you could do!

MrsAvocet · 30/04/2021 22:25

@DuckWithOneWing

Today is a sad day. I've realised I'm not going to be able to drive again (well, definitely not for a while) so I've put my car up for sale.

Welcome @TheTempest! It's nice to have you, even though I wish none of us needed to be.

I can empathise Duck. I did something this week that I should have done at least a year ago really. I've given up my professional registration. I know it was the sensible thing to do as I was spending money that I can't really afford keeping up a registration that I know I will never use again, but it still made me sad. I thought I'd come to terms with the fact that I'm never going to be fit to return to work - at least not my old job - but the finality of closing that door was still hard.
PaperMonster · 01/05/2021 06:25

@DuckWithOneWing that is a sad thing to have to do indeed, I’m sorry. I’m struggling with driving but when we are next able to change the car, we’re going to have to go for an automatic and hopefully that will help.

Akire · 01/05/2021 13:06

Someone’s posted about a Disability board. I know it’s been asked over the years. MN have said we can’t make decision over BH but suppose we could move these threads under Disability boards than leaving them in random health!

I know there is a SN board but most of us don’t consider us to have SN. We just have same needs as everyone else.

Have managed to do some cleaning and laundry. Was expecting full on rain today so nice have some sun while it lasts.

Akire · 01/05/2021 21:11

Thanks for posting the link @doadeer. Have tried to explain my understanding of Special needs as a term most adults with Disabilities would exclude themselves from, but may have made it worse!

The you just need to treat me as anyone else is ban of my life I don’t think telling people I have special need when there is nothing they need to “do” for me helps. Though be suprised if Mn make a decision when we were watch and wait for months... then those who showed an interest lose the thread and give up.

goose1964 · 02/05/2021 19:32

I had a lovely walk yesterday we met up with my son and his family who've not seen for nearly 2 years. I was surprised at no pain this morning, but it's just hit I feel like someone's injecting lava into my glutes. It was worth it. We've just booked a family holiday for june. I just need to make sure I've enough painkillers because that will be full dose.

Akire · 02/05/2021 21:10

@goose1964

I had a lovely walk yesterday we met up with my son and his family who've not seen for nearly 2 years. I was surprised at no pain this morning, but it's just hit I feel like someone's injecting lava into my glutes. It was worth it. We've just booked a family holiday for june. I just need to make sure I've enough painkillers because that will be full dose.
2y wow that’s long, I keep losing track of what year it is mind. A booked hotel lovely have something to look forward too.

I’ve been looking at ways to make Manuel wheelchair a power chair. I have a power chair but can’t find it cars. But you can buy motor and control for a carer at the back around £800 but the model that lets The disabled person drive is nearly £5k it’s silly money. When you can buy a scooter goes for 10miles it same sort of battery power.

So not getting anything anytime soon. Sad as if could have that sort of adaption could have a mobility car. But adaptations needed for power chair is more like £30 grand.

CervixHaver · 03/05/2021 16:23

SOOOO happy to have found this thread!

Anyone on Transtec or BuTrans (Buprenorphine) Patches for pain relief????

Thanks x

Original poster
doadeer · 03/05/2021 18:46

@goose1964 oh wonderful you managed a nice walk! Does anything ease the pain or just rest?

@Akire it's terrible how expensive that all is... Who on earth can afford it?!

@CervixHaver welcome!! Not me but I'm sure someone can help.

I'm feeling very down which isn't like me. My whole body aches and I'm just exhausted. I'm off gabapentin but still having hot and cold flashes and bad headaches. I had a nuclear scan on Friday and get results on Wed at f2f appointment with consultant. I don't know how I feel about it... If he says they can't see anything I'm going to be desolate... But I'm also terrified they do see something bad. I don't know what a good outcome even looks like. All I know is my back and pelvic pain is exacerbated with movement and it makes me very tired. My joints are creaky and clicky and painful and burning the nerves didn't help.

Needed a rant 😢

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Akire · 04/05/2021 20:40

Tuesday check in and all that. Drinking wine watching a murder about most exciting thing that’s happened today!

Evenstar · 04/05/2021 21:01

Hope it’s OK for me to join, the doctor has provisionally diagnosed me with fibromyalgia and I am waiting for a rheumatology appointment to confirm.

Looking back over the years it does make sense, I just thought most people felt as tired and achy as I did.

I have decided to buy myself a 4 wheeled shopping trolley to try and get out a bit more. I do still manage to walk my dogs, but feel I could walk to the local shops or somewhere in the afternoon if I had something to lean on. I asked on a fibromyalgia group I have joined and I was thinking of a Sholley which now comes in some really nice colours, someone recommended me a different one that you can sit on, but I am not sure I am ready to “give in” if that makes sense and have something that looks like a mobility aid.

There is a lot to come to terms with, how has anyone else coped with the acceptance?

Akire · 04/05/2021 22:25

It’s aways strange first get a mobility aid it’s like a big signal isn’t it. Had to look up a Sholley looks like a very big trolley rather than mobility aid. Not sure if it would give you enough to lean on when it’s empty and may be to heavy on arms or shoulders when it’s full. Though this is just by looking I don’t know what you find best.

Sometimes you have to try things out and see. Nothing ventured nothing gained! Can you borrow someone’s for an hour and see?

Nobody really cares what everyone uses even though you may feel silly to start with. People usually clock mobility aid and try get past you as quick as possible you just become invisible.

WinoLino · 05/05/2021 08:28

@user1497873278 that sounds really awful. I have many bulging discs but different symptoms to you. Can you ask for a different opinion? Awful to have to be in that much pain. Are there any exercises that help? You might find Bob and Brad helpful on YouTube.

Had a phone appointment with physio yesterday who was helpful but also told me to stop going to Chiro as I'm wasting my money. I've been going for about 10 years Sad. I've sort of lost sight of whether it's helpful or not now though.

WinoLino · 05/05/2021 08:36

@doadeer sorry I've only just seen your replies! Are you weaning off Gabapentin because you don't need it anymore or side effects? Physio told me it's addictive but I didn't think it was. Not sure what to make of it. It has helped I think but hard to know if it's that or it's just getting better on its own.

Yes we were using an actual roller sports massage thing when it was bad and that gave great relief!

Original poster
doadeer · 05/05/2021 09:30

I had my nerves burned in my back but I'm still very sore and I felt like the gabapentin did nothing for me so I wanted to come off as I was on 6 tablets a day. I did come off gently but still had shivering incidents like when I came off coedine. But I'm off now and feel the same so I'm glad I did!

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Evenstar · 05/05/2021 09:46

Thanks @Akire I took the plunge and ordered one to try, it does say they are designed to lean on. I talked it over with DH and we agreed that I can move on to something else when I feel ready or there’s a need. My mobility is good still just the tiredness, I am still in bed after doing too much yesterday.

Not something you plan to be considering at 56 is it? I am also feeling worried about whether our planned move next year should be to a bungalow as I am really struggling with stairs. I saw an article yesterday cautioning against moving to a bungalow too early as you lose muscle strength, equally it said that if you are having to haul yourself with your arms, which I am, it’s better to not be doing them.

Akire · 05/05/2021 10:02

@doadeer

I had my nerves burned in my back but I'm still very sore and I felt like the gabapentin did nothing for me so I wanted to come off as I was on 6 tablets a day. I did come off gently but still had shivering incidents like when I came off coedine. But I'm off now and feel the same so I'm glad I did!
That’s great news well done. What way are they addictive or is it just withdrawal effects I think that’s to different things.
Akire · 05/05/2021 10:04

@Evenstar

Thanks *@Akire* I took the plunge and ordered one to try, it does say they are designed to lean on. I talked it over with DH and we agreed that I can move on to something else when I feel ready or there’s a need. My mobility is good still just the tiredness, I am still in bed after doing too much yesterday.

Not something you plan to be considering at 56 is it? I am also feeling worried about whether our planned move next year should be to a bungalow as I am really struggling with stairs. I saw an article yesterday cautioning against moving to a bungalow too early as you lose muscle strength, equally it said that if you are having to haul yourself with your arms, which I am, it’s better to not be doing them.

I’m not sure about stairs issues. I’m sure being active is important. But how much is going up and down stairs twice a day (if loo is downstairs) giving you that much exercise? Plus as you say if you are using arms and risk of tripping or falling you be no better off.
StarCourt · 05/05/2021 10:15

Oh can I join please? I've had 2 ops on my back after having back
Pain since I was 15 ( I'm 54 now ). A hip replacement 2 yrs ago and the other hip needs doing also.
I've had chronic head aches, neck and shoulder pain for 17 months too.
I'm in constant pain, exercise makes it worse, I can't sleep or focus and I'm always exhausted.
Single parent who needs to work full time but I'm just dragging myself through my days

Original poster
doadeer · 05/05/2021 10:23

I don't really understand the addictive nature of the tablets, when I've been on codeine and gabapentin, I haven't felt desperate to take them it was more just necessity and actually I didn't really like taking them I hated having to remember so many tablets a day, but both times I have felt really awful when I came off them which shows that they must have a more prominent role then I realised in my body. Very hot and cold and more headaches than normal. Last week I was in the playground with my son and I couldn't stop shivering and shaking

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Original poster
doadeer · 05/05/2021 10:24

@StarCourt

Oh can I join please? I've had 2 ops on my back after having back Pain since I was 15 ( I'm 54 now ). A hip replacement 2 yrs ago and the other hip needs doing also. I've had chronic head aches, neck and shoulder pain for 17 months too. I'm in constant pain, exercise makes it worse, I can't sleep or focus and I'm always exhausted. Single parent who needs to work full time but I'm just dragging myself through my days
You are most welcome! I'm so sorry for you that sounds absolutely dreadful, do they know what caused your back pain and your other issues in the first place? I can't imagine how difficult that must be for you
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