Chronic pain Pub Corner - support thread#4 All Welcome

[Akire]

Welcome to our new shiny thread for February. The lattes and expressos were not quite hitting the mark so we have moved to the pub. Whether you need Diet Coke or stiff drink help yourself we have a tab going and hunky staff are very attentive.

It depends my area will give you a mobility wheelchair if needed of either kind. But if you can self propel indoors you don’t qualify for a power one for outdoors. Even though this could mean you are trapped at home. But all NHS Trusts are different so worth asking.

Ask GP or Physo to refer you to wheelchair services for an assessment. Being able to walk safely and leave the house is important. Sounds like you should get PIP if struggle walk inside. Worth an appeal?

Plus if you can bearly walk and one weak arm a power chair sounds like the only real solution.

I've just done the appeal today, for PIP, and have asked the gp for a letter to support.

I feel like am stuck inside and worsening. So need to be able to get out and about. I can't drive anymore, and use buses, but, the bus stop is quite far from my house.

I walked to the post yesterday and slept afterwards for 2 hrs. Couldn't feel my legs at all, no benches on way to sit on for a rest, unsafe.
So need to plan as not getting better. Thanks Akire, will ask gp to refer me to wheelchair services in nhs/physio. They will be halpful in telling me what best to get too

Daiymyum all the best and I really hope you get the support you need with this. It makes such a difference getting into the right syste. Ut it seems to take for fucking ever getting there. It's so time consuming. But. Inbexcellent news, my pharmacy now does deliveries which is a massive load off. DH working away at the moment so I've been getting to them myself, but it won't be a chore anymore and we won't have to spend timenof the weekend which cld be spent doing far better things than going to the pharmacy.
Small win but a good one

Great on the appeal it’s disgrace to fight the system but that’s how it is. Worth mention that you are so unsteady you feel unsafe. Sometimes you need spell it out to doctors so put in your notes. Often they don’t ask
How you manage day to day as busy sorting medical side. Plus if can’t stand or walk safely can’t really cook or manage that side it only lead to burns and disasters.

Thank you both. Will ask the gp on Friday.

Feels like I've been fighting for years and now nearly have a diagnosis of Ms. Like I told the doctors all along. One of far too many illnesses I've been blessed with for a 40 yr old. Have to have another lumbar puncture soon.

Gave the Neurologist a mouthful today, Said wanted a face to face apointment, I said 'so yrs waiting and now you think to assess me and ask what my symptoms are'. He was very rude at my 1st apointment, which he was also reminded of.
Feeling rather shit, guilty for having a go, relieved and afraid. Am thankful for you lot, as many irl do not care or understand

I wish mine did deliveries. The size of my prescription bag is embarassing when I collect it

I know, I've been having burns and accidents. I bleed like a pig and bruise like I've been shoved down stairs. Have to spread everything throughout the day, lists, timers etc. Perching stool/ mini chopper/kenwood thing.
They dont want to know about how much you struggle, only that nobody does it for you. I said I'm single, who is going to do it for me. This is why I need Pip so can pay for help yes, idiots.

Ill keep applying again and again until I get it. Theres people on it for far far less than I have. They'll be fed up of me in the end

@Daimyum

I know, I've been having burns and accidents. I bleed like a pig and bruise like I've been shoved down stairs. Have to spread everything throughout the day, lists, timers etc. Perching stool/ mini chopper/kenwood thing. They dont want to know about how much you struggle, only that nobody does it for you. I said I'm single, who is going to do it for me. This is why I need Pip so can pay for help yes, idiots.

Ill keep applying again and again until I get it. Theres people on it for far far less than I have. They'll be fed up of me in the end

I really hope you can get help with a wheelchair. It sounds essential to you at this point

@Daimyum

I wish mine did deliveries. The size of my prescription bag is embarassing when I collect it

Have a look and see if pharmacy2u cover your area.

I keep getting emails from them but I use a local delivery service.

Thank you both

@Daimyum

I know, I've been having burns and accidents. I bleed like a pig and bruise like I've been shoved down stairs. Have to spread everything throughout the day, lists, timers etc. Perching stool/ mini chopper/kenwood thing. They dont want to know about how much you struggle, only that nobody does it for you. I said I'm single, who is going to do it for me. This is why I need Pip so can pay for help yes, idiots.

Ill keep applying again and again until I get it. Theres people on it for far far less than I have. They'll be fed up of me in the end

It's a crazy situation that you spend 10 sections of a PIP form about how you can't walk, move around, cook, unsafe, perch stool etc at home. Then come the mobility element it's "we think you can probably walk fine outside"

I put my appeal in 8 weeks ago. They said about 8 weeks for response. No response yet, so rang them yesterday. They were really nice and apologised to me as appeals now taking 12 to 16 weeks

Fingers crossed for us both. It's bloody exhausting

Yes Rainbow, it's ridiculous isn't it.
Looks like I'll be waiting a while then. At least it gives me time to collect letters as proof for them.

Cross everything, yes. For both of us. The problem is that other things depend on pip like help with wheelchair, help with traveling, railcard, etc etc.

Who was it that started dating again? I wonder how it's going for her

I have everything crossed for both of you.❤
It's so stressful having to fill in forms especially ones that are so important. And especially when feeling so poorly.
I seem to go to pieces with anything official like dealing with the bank or form filling.

I can't even call to ugrade my phone. Can't face it at the moment!

Hi lovely peeps
First time posting on here, but i have talked about chronic pain on GH board before. I have Systemic Sclerosis which causes pain/swelling in hands, feet, back, joints ect. I would say my standard pain scale is between 5-8.
Boxing day i came down with a horrific bout of shingles. Because of my meds im severely immune suppressed and it covered half my body, tummy, sides and back. The pain was utterly horrific. I was crying and rocking in pain. Gp gave me anytriptiline and Gabapentin but tbh they barely touched it. My lovely DH had to get me in and out the bath, dress me and put myshoes on as any movement was utter torture. 7 weeks on its still there. Its dropped from 10 for the pain down to about 8 put thats on top of the standard pain. Im in a very dark place. I exist from painkiller to sleep to bath. I cant remember the last time i found pleasure in anything and cry with the pain every single day. Ive attached 2 pics, pic 1 is a week into the shingles and pic 2 is today( bear in mind thats just my tummy. Its the same on side and all across my back too). Is there any point contacting GP? Im pretty sure they cant give me any more painkillers. Is there anything i can do to help myself? How do you guys cope if you have chronic pain and something else comes along thats also painful? Any advice would be amazing. Thanks :)

@Redannie118 that sounds horrific. I was just coming to post a out how much pain I'm in today, but I can't imagine having shingles on top of everything else i have.

Hi that sounds horrendous, what pain killers are you on? It’s always worth going back GP if you are at point of crisis and crying and can’t function at all. What’s the expected recovery for you? Sometimes knowing one thing will improve at some point makes all the difference.

Coping day to day is bloody hard as you know we all have our tipping points. Swearing a lot and crying helps. You do have to keep asking about different meds though or ask for second opinion. Just because one Gp says oh well sorry nothings else, another Gp may be up to trying something else.

@Redannie118 I have Systemic Indolent Mastocytosis. Since you have Systemic Sclerosis I would urge your GP or other healthcare professional to refer you to Immunology with a query to that condition. It's a similar condition / co morbidity, but with different (and hopefully more effective) meds x

Have you been given Acyclovir?
I get shingles regularly, I find calomine good or germolene for the itching. Otherwise it’s paracetamol and Tramadol regularly and amitriptyline at night.

Sending everybody love and support. ❤️

I've had an appointment for the spasticity clinic in Birmingham come though this morning. It's in a couple of weeks 👍🏻

Thanks @OnwardsEverStridingOnwards good news about hospital, let’s hope something good can come out of it.

Any plans for anyone today?

My mums coming today. The kids are off school sock so no school run for me. Just going to relax and take it easy. Pain is bad today.

Good plan as any, shame about the kids hope not to unwell. Pain seems reasonable but tired, but feels like waste if don’t do stuff when don’t feel entirely dreadful. The odds of having good pain and energy day at same time is like waiting for an eclipse.

Hi everyone and thanks for lovely messages. @Gilead yes i took 800 mgs 4 times a day the first week i broke out. Sadly it didnt do anything yo shorten or lessen attacks.@Akire @RainbowZebraWarrior i have Gabapentin and Amytriptiline which ive been told are pretty much the only painkillers for shingles. I wasnt going to go back to GP but I will now and i will mention immunology. @HerRoyalHappiness thank you x

The drugs are to help nerve pain are you saying you take no other on top? No codeine or tramadol? They may not truly help with pain but sometimes if they let you feel slightly more out of it or drunk and you care less about the pain, then that is better than nothing.