When you think it can't get worse and you are proven wrong!

Zec Richardson

I haven't posted on her for a long while but need to offload.

I am a full-time wheelchair user, I get a lot of pain in my hips, legs and feet but I have been coping with it quite well recently, I even announced I was happy.

And then I wasn't!

I get stiff hands if I do something like weeding in the garden. My hands, wrists, and shoulders were damaged by using crutches for way too many years, but the shoulders rarely played up since using a wheelchair. The stiff hands would flare for a couple of days, but nothing too bad.

At the beginning of August, my hands, wrists, and shoulders started to play up and for the past few weeks it has been unbearable. They seize up overnight, and sometimes I can't even get myself out of bed in the morning and if I can, my wife has to push my wheelchair to the bathroom, and then I get stuck on the toilet. Late morning and into the afternoon it eases up but then again at night it all happens again.

I am used to pain, but I am not afraid to admit that this has had me in tears, like properly sobbing with the pain and the frustration.

I have been referred to rheumatology, and I am seeing them on the 3rd of October, which is quick but still feels like a long way away.

I am not sure if I have enough fight left in me for this new level of disability.

Bluebell21

Hi @Zec Richardson I am so sorry that you are suffering so much. As you say although the 3 October is a very quick appointment when you are in so much pain it can seem forever. Could your GP help with strong painkillers to help until then?

Would heat help at all maybe a hot water bottle or heat pad.

Please take care of yourself and good luck for the 3 October.

Zec Richardson

I am using an electric heat pad. I am already on a lot of pain meds but have increased the Matrifen patches and using Oramorph at night.

I was put on Ibuprofen, then Naproxen but I think they made it worse. No proof but it felt like it

luvpink

@Zec Richardson

So sorry you are suffering so much.

Its really miserable and draining living with so much pain.

I use a heat pad too and it provides some relief.

I also use a tens machine.

Sending you best wishes. 🥰

Rosie_Scope

Sorry you're in so much pain at the moment @Zec Richardson, it really is exhausting living with chronic pain and it's always difficult to adapt when your conditions are worsening.

As Bluebell21 mentioned, would your GP be able to help you find some relief before your appointment?

I hope rheumatology are helpful and can get some longer term things in place to help you feel more comfortable.

SaraC_Scope

Hi @Zec Richardson

I hope you are ok today. I wanted to wish you the best of luck for your appointment tomorrow and hopefully you get some additional support.

Sara

kc1978

@Zec Richardson so as a wheelchair user, I understand similar issues with crutches and falls. Wake up unable to move.

Wishing to have an hour pain free some days.

Painkillers unfortunately we build up a tolerance, so pain starts to come back.

So increasing analgesia has its limits, the drugs also have side effects and risks

On Fentanyl and oramorph here.

There is a theory which is used called the Pain Gateway Theory. Well worth a look, as it did help me come to look at things differently.

I tend to find Therapy pools (warm warm ones and exercise gently can help) however these are not easy find.

I also understand the thoughts of can I carry on.

I wished at times I'd rather of had died of a natural cause than experience the last 3 and something years.

But I also know how devastated family would be if I wasn't here.

Talking to a pain specialist psychologist, could help. Honestly it does. Diversion works some days.

Others I cry until I can't. Those days suck.

Your not alone, there's lots of us out there.

I was a nurse for 23 years and disability took away my mobility, my mental wellbeing and a career I had dedicated my life to from 18.

I hope it go well with rheumatology, but there are no magic 🪄 and it will be working out what works for you.

I hear the pain in your story, the struggle to keep going, but find that strength, that love for those around you, and work with anybody your referred to and things will seem better. Not perfect but allow you to not feel so awful 😞

Zec Richardson

So it turns out that it was Gout.

I always thought gout affected the big toe, and so you learn something new everyday!

It is caused by increased uric acid in the blood that crystallises into the joints and the levels in blood should be between 0-35 and mine was 617!

It was agony, and I was unable to move hands, wrists, and shoulders and some of the worst pain I have ever felt and I am no stranger to pain and injury.

Rosie_Scope

Blimey @Zec Richardson, that level is high, doesn't sound comfortable at all! How are you doing now? Have they been able to offer any treatment for it?

dkb123

There is a campaign in the NHS to get patients to reduce the use of opioids and help them with the withdrawal symptoms that come with addiction. I was on fentanyl patches and Tramadol for about six years, waiting for a hip replacement, and the GP started playing around with the meds, reducing them from 200mg to 30 over eight months. They didn't suit me and disaster happened along the way. I was admitted to the hospital for 4 days with delirium and now have double vision and the same level of pain that I always had. So be careful when agreeing to this sort of plan. GPs are not used to dealing with these high levels of painkillers, and some just don't know what they are doing.

egister

https://forum.scope.org.uk/discussion/comment/919576#Comment_919576

Medicine successfully combats this condition. Plus you must follow a diet.