I want to cut my own leg off!!

Emmab076

Hi i know the title sounds extreme but thats the way i feel. Have had a bad flare up in my feet shin calf and knee. Today my shoulder and neck has started too...I am on methotrexate but it feels as if its doing nothing. I am waiting for a response from the specialist about adding something but im not holding my breath.
Does anyone else ever feel so frustrated with this?? I have psoriatic arthritis and it just keeps attacking in random places. I have 3 children at home and wish i could do more but even a short walk is painful at the moment.

Bluebell7

Hi,

I'm so sorry, have you ever seen the pain management team? I've felt like you, your not alone. Are your bloods stable ( inflammatory markers)?

Hope you feel better very soon.

Hugs

Emmab076

No i havent seen pain management is this something i should look into?? I tend to liaise with my GP a hell of a lot. Last time i had my bloods done they were 7.6 but they didnt seem bothered. Other than that all fine. Been on methotrexate since New Year but hoping to move onto injections or add something else in the next couple of weeks. Thanks for your message.

Agnes

Hi Emma. Poor you! Flare-ups are ghastly! I once had such a swollen and painful finger (not the only place I have the Arthers). It was so swollen the skin split, and for months it developed a sinus that leaked fluid., and was excruciatingly painful. Short story: I booked an amputation. By the time the appointment came around the finger had settled, so I cancelled. Now the finger is deformed, but actually quite useful! Don't have anything lopped off yet!!!!!

Sadly, you have arthritis. I do too, and so do hundreds of thousands of other people. It won't go away! Ess Aitch One Tango! Do your best not to make it worse by getting stressed and tense.

I am sure you already have explained to your children that you suffer from "bones" or whatever word you use to them. I am sure that they will help you as much as they can to enable you to look after them

Yes, like you I feel very frustrated by my own inabilities, and also the lack of any help from my GP. I was referred to a Pain Clinic in February by a spinal surgeon (after years of dismissal by my GP, I took my Partner with me to GP surgery and got referred to a surgeon). My GP initially had me in tears when I went to him for Pain. he said "There is nothing more I can do for you". Later he would NOT prescribe Linocaine patches which help, or refer me to a pain clinic himself. So now the Arthers are "extensive", the surgeon can't help, and I am waiting for referal to a Pain Clinic hoping for some help.

You seem to have SOME access to help. More than I have. I haven't heard of methotroxate.

There seem to be two issues causing your frustration: 1. Pain 2. Lack of function.

1. Pain. Other than unobtainable medical help, I find IGNORING it the most helpful on a daily basis. I do counting and sums in my head because numerics don't come easy, or sing songs. I think about tasks needed to be done. Move, despite the pain, keep your mind busy with recipes you can cook in stages for your family, your family's needs, do very hard puzzles, and lose weight if that is a contributory factor. You will feel proud of yourself if you are the right weight, producing nutritious food for your children, and your home is clean.

OK there are the worst days. For those you need childcare. Do you have any support? This Covid19 is making accessing extra needed help very difficult.

1. Lack of function. So frustrating and distressing for someone who is a parent, and a person in their own right who used to be able to do so much more. Being in pain and with physical disabilities means more planning and thinking. The planning and thinking will distract you from the pain. Split tasks down to smaller sections, so the children can help, or you get rests inbetween getting essential things done.

I think I have written too much! Best of luck!

Mike1

I know how you feel about the pain Emma, one of my stock answers if someone asks me how I am is "nothing that a sharp knife can't cure!" that normally shuts them up. Hang in there.

Delaine

Hi @Emmab076

My husband feels just like you. Hi has psoriatic arthritis in all his joints and his spine. He has patches for pain relief and other meds, but it does not stop the pain. In fact, it barely seems to touch it. He often asks me to cut his head off and put it in a jar (and other things). More seriously he has said having his legs amputated would at least 'half' his pain.

He gets very frustrated that he can't teach his youngest to ride a bike, or take them camping, or even walk to the skate park to watch them which is less than a minute away. Doing anything physical or mental is very taxing. When he does try to do something, he is left exhausted and in a lot more pain (if that is possible). We can't see a way out at the moment.

However, when this covid-19 is done, I will be pushing the doctors and specialists to get him in to a reasonable state where he can live his life a bit. He no longer has any fight to do it. His fight is getting out of bed.

You have to be a bit pushy it seems to get the doctors to move on to the next stages. Try to get a bit of knowledge of each step of treatment. That way you will know what has been tried and what is still available if you need it. My husband eventually received the injections (though he had to stop for a bit and is now waiting for the nurses visit so he can re-start again), which helped quite a bit (he had pain still but he could cope with it), but it was a fight to get them.

Hope your flare up eases very soon and you get what you need from your specialist.

Delaine

Bluebell7

Hi,

I hope you can get a referral to pain management, fentanyl patches have helped me. My rheumatologist prescribed them, then my Gp gives me monthly prescriptions.

Hope the pain eases really soon.

Hugs

Primrose

I am so sorry about your pain. I too am laying here at 2am after taking my bio drug, methotrexate did not work for my Rhumatoid Arthritis nor did a further four drugs. Ten years ago when this all started I was a fairly young fifty year old. I have got a strong drug but as in this flare up, the only thing that works when the pain is this bad in my hip and left leg is the pain killer Naproxin. I am lucky I am under a hospital specialist. I do hope you get all the tests and help you need and one day a cure will be found for this such painfully disease. On a positive note in between any flare ups I live life as fully as I can I write poems and draw.
Kind thoughts.