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We want to hear from you: please tell us about your experience of the online community.

Why is it such a struggle?

Spinney

I had to give up work in January 2022, I applied for ESA, I get £300 a month, I applied for support group ESA and PIP, still waiting on a decision for both. I have lumber spinal stenosis. It just seems so hard to get any help, can't walk? just buy your own stick, can't drive the car? just get on the bus, I ask the GP for help, he just gives me pills, the pain is extreme and I take more pills than I should. I feel like a burden. I'm fairly emotional -never used to be, apparently there's loads of help for me, but I'm not seeing any so far. I know things take time but, I'm just tired, of it, the situation, my being a burden, just tired.

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Comments

Tori_Scope

Hi @spinney

It sounds like things are pretty tough for you at the moment. I imagine many of our members can relate to feelings of being tired, worried they're a burden, that there's no hope, and so on. I hope that you can feel a little less alone by posting here.

What kind of help would you have in an ideal world?

Is your GP aware that you're taking more pills than you should?

If you ever need someone to talk to, Samaritans are always available. You don't have to be suicidal to get in touch with them, and they're a listening service, which means they won't tell you what to do. You can call them on 116 123, or email jo@samaritans.org. You can also use CALM's live chat between 5pm and 12am.

SueHeath

Hi @Spinney i feel your pain and it is a nightmare.
When did you apply for pip and ESA ?
Are you under the hospital for you stenosis or what treatment have you had yet. I know its all a big waiting game at the moment, i finished work last year with my spinal stenosis.

Spinney

@Tori_Scope, my GP knows I'm over medicating, I am trying to get back on track but I guess my pills are to hand, so easily accessible. @SueHeath I've had 3 spinal operations and need 3 more. I've now got morphine patches which aren't effective. I'd like to chop my leg off to stop the pain. I'm sure they think I'll be back at work soon. I had telephone assessments for PIP and ESA so waiting on those. I'm supposed to be this strong confident person, but I'm tired of fighting.

SueHeath

Bless you @Spinney I have had to give up work, i get the feeling your a lot younger then me though.
I guess were all different with how we are affected, i've had my problem about 3 years now and because of covid the wait to see the specialist was well at least 18 months in that time i was like you, i couldn't see myself coping.
I can not have any opps as my spine is not stable enough so at the moment i am on the list to try a pain implant to help manage the pain, i really want to come of the meds as i am having problems with side affects.
The strange thing with mine is as time goes on i don't know if i am getting used to the pain or if i am more relaxed with it as the stress of working has gone now. So if i have a bad night i can take naps on my recliner chair down stairs, knowing i can sleep/nap during the day.
I do find if i have a good day and i walk more or do jobs around the house, i do suffer more on the evening/night and next day. I have a lot of self help things i try and i use them at different points.
Do not feel you have to be strong and not give into the pain, unless you've had it people do not realise how bad it is. All i can say is try different things, when i get up from the chair i have to stand still for a while before i can even try to walk, walk past some of the pain as sitting can make it worse, but you will know all this as it's your body, i find cold on my body better then warm, so i also use gel pads, yes i have to pay for every thing i am trialing/testing but it's worth it if it helps for even a short time. I don't know if i am helping here or not.

Spinney

@SueHeath it's lovely to find someone with the same condition as me, I try to put a brave face on, but it's **** isn't it? I had my first back op in 2015, but that's because my discs kept slipping out, they've only just decided it's spinal stenosis after re studying the MRIs. The pain implant sounds interesting? Could you tell me more. I don't have side effects from anything, maybe why I feel nothing is working. I'm 48 this started when I was about 41. I stand, sit, walk, lie and sleep, I used to be able to lie on my side to get relief but nothing makes it better anymore. I had one of those spinal injections too, it didn't work so I'm having another one. Honestly don't know how to approach the PIP people if they deny my claim. I crawl on my hands and knees in the morning as the pain is overwhelming. I had the easiest job in the world, but it was still too much. Btw, you are helping so thankyou 💞.

Spinney

@Tori_Scope I'm told I can borrow or adaptations to my house to help me move around, NHS website says phone GP, GP says phone local hospital, hospital says I need a referral...and I'm back to square one.

janer1967

You can self refer fir a care needs assessment on gov website an ot will come and assess your needs and make recommendations for aids and in most cases supply them

SueHeath

Morning @Spinney Hope you managed a sleep last night.
How far down the line are you with your PIP - i put a claim in Feb and got mine.
You say they have only just noticed it's stenosis thats a pain, so have the doc's/hospital tried you on the nerve pain killers, i am on duluxotine, the side affects are affecting me but it does help the pain.
I have been moved across to a different hospital now, they are going to try me with a cocktail of injections, think he's experimenting on me ha ha. Yep their is someone else on the scope forum who has the implant and they have had good results, i had never heard of it till the consaultant mentioned it. From what i gather it works via a little devise put near the spine or pelvis area,and it works on electrobs, you can find/read about it on line, but like every thing else you have to go through the other things on offer first. It's awful how we have to wait for every thing.
I know it's all about money but have you tried/tested other things you can buy, like the stick on pads cold or heat to test if any work, i brought a special cushion to sit on in the car that helps great, but not on my chair in the lounge.
A lot of it is trial/test to see if you can get relief.
Your emotions are understandable and a normal factor i'm afraid, with lack of sleep and qaulity of life at the moment but it will get better, now they have found out what the problem is, it's just the long waiting game we have to put up with.
Stay strong and try and channel your thoughts some were else.

Spinney

@SueHeath I sleep great because I take pregabalin and 200mg puts me in a deep sleep. I have morphine patches 10mg for now and 600mg of pregabalin a day, this isn't enough for me hence me going over. Plus this literally aids me to move around in the house, it's not enough for me to have a life, I can't walk alone, jump in the car etc. I also bought a tens machine, I like to think it helps. I'll ask about the implant as I have an appointment on Monday. I think I've tried everything, I have my cushions which goes everywhere with me. I applied for PIP in March. I'd rather have injections and implants rather than more operations, fusion surgery has been mentioned which I dread. My family are sick of me talking about pills so thanks for listening.

Tori_Scope

@Tori_Scope I'm told I can borrow or adaptations to my house to help me move around, NHS website says phone GP, GP says phone local hospital, hospital says I need a referral...and I'm back to square one.

I'm sorry you've been bounced around different services @spinney. As janer1967 has said, referring yourself for a needs assessment from your local council may be a good place to start. You can find out how to do that on the gov.uk website.

We also have a page about getting home adaptations on our website, which you might find helpful to read.

@Tori_Scope, my GP knows I'm over medicating, I am trying to get back on track but I guess my pills are to hand, so easily accessible.

Could your family help you to regulate how many tablets you're taking?

Spinney

@Tori_Scope I will have a look at the council website for a needs assessment, thanks, as for the pills, my husband is around and is duly annoyed at my over indulgence with my meds, I'm sure it'll even itself out over time 😊, thanks for replying

Tori_Scope

Is your husband a good source of support for you @Spinney?

Let us know how you get on with looking at the council website. It can sometimes be a bit of a faff to find out how to contact them, depending on the council, but you should hopefully be able to find it

SueHeath

Bless you @Spinney that's why were all on this group for advice, guidance comparing scares ha ha and friendship, so i don't mind lending an ear.
I tried the tens but i found it made my legs jurk it was funny but annoying at the same time.

Spinney

@SueHeath the pregabalin that I takes makes me jerk too, not great when you are trying to nod off

SueHeath

Yep i agree @Spinney

Spinney

Slight update if I may. I was finally awarded PIP which mildly takes the strain off me financially. I'm due to have another spinal injection but unfortunately I'm told the waiting list is 4 months long. I've asked my GP to arrange for an MRI, and today I will be asking for my GP to increase my morphine patches. For anyone who suffers from Spinal stenosis is your leg pain worse first half of the day or the second half of the day? The 4 month wait is soul destroying, as this means any chance of an operation will be pushed right back. Has anyone applied for a mobility car? Im told I can but the advance payments are huge as I need a 7 seater due to large family, TIA Spinney

Cartini

Spinney said:

Slight update if I may. I was finally awarded PIP which mildly takes the strain off me financially. I'm due to have another spinal injection but unfortunately I'm told the waiting list is 4 months long. I've asked my GP to arrange for an MRI, and today I will be asking for my GP to increase my morphine patches. For anyone who suffers from Spinal stenosis is your leg pain worse first half of the day or the second half of the day? The 4 month wait is soul destroying, as this means any chance of an operation will be pushed right back. Has anyone applied for a mobility car? Im told I can but the advance payments are huge as I need a 7 seater due to large family, TIA Spinney

My right leg is mainly affected when I stand up or walk. When I`m lying on the sofa (which I spend most of my days doing) it doesn`t affect my leg....... yet.

SueHeath

Morning @Spinney nice to hear of your update, even if it's not the best out come.
I'm still waiting for my pain management appointment, like every think else it seems we have to wait a year for any thing to happen.
Also happy to hear about PIP.
You asked about the leg pain, I am in a lot of pain when I 1st get out of bed in the morning. from my back, both legs.
What i have noticed recently is the pain goes away quicker on my left side, but i don't know if this is because I have a large area on my pelvis that is now totally numb. From mid day onwarded I am now getting more pain in my right hip down to my knee, this could be to do with my posture.
How long, if any did you get relief from last jab ?

Alex_Alumni

Hello there @Spinney and thank you for your update, I'm also pleased to hear you've been awarded PIP

I am sorry to hear about the wait for another spinal injection, have you spoken to your GP or other specialists about the impact this is having on your mental health?

To answer your question on a Motability car, advanced payments do tend to be quite large the more adaptions/larger the vehicle you require, but I believe that some grants are available to apply for if you're eligible.

Let us know if there's any other questions which pop up in the meantime, and keep us in the loop with how you get on.