Struggling At The Moment

[Crazy_Cat_Woman]

Hello Everyone

I am very sore this week. Constant pain in my lower left abdomen which radiates around into my back. I’ve had 15mg of morphine already tonight and it’s still painful.

My wrists, elbows, knees and ankles have been sore again this week; although the hydroxychloroquine has been amazing at relieving these pains.

My malar rash is moderate at the moment and I have ulcers in my nose and on my tongue. My hair is falling out whenever I touch it and my legs are itchy. And to top it off I’m exhausted but can’t sleep!

A new symptom is pins and needles in my middle and ring fingers of my left hand. I had a dizzy spell yesterday too and a moment when vision in my right eye went all blurry. Not sure if these symptoms have anything to do with UCTD or not?

I’ve spoken to the Rheumatology dept and they are going to see me at the end of April. Apparently they hadn’t taken all my abdominal/ kidney pain into consideration??

I’m stressing a lot about going back to work in May and also about my daughter. I’m not sure I can go back to work in my present state....and frankly I just feel like a useless waste of space. I won’t be eligible for benefits so if I don’t go back to work my hubby will need to support me 😢

Anyway, I’m just super low tonight and wanted to reach out. Big hugs to you all xxxx

[miccika1]

That sounds terrible. What do you usually do when in a flare? If I was you I wouldn't feel bad to have a husband support me. You should feel lucky you have a husband. Im sure you would do the same for him if he was that sick. Please take care of yourself and if you could get any help or relief put yourself first and accept anything you could grab to help you.

Did you GP already check your kidneys/bladder/ovaries for that flank pain. That sounds pretty urgent to me to exclude any infection...

[Crazy_Cat_Woman in reply to miccika1]

Thank you! I am very lucky to have him. I’m just finding it really hard not working and paying my own way. Ive always been very independent and it’s a big adjustment to make.

I’ve been to casualty and in hospital so many times with this abdominal/kidney pain. They have done lots of tests over the years before I was diagnosed with UCTD but found nothing. At the moment I just have morphine to cope with it at home. I’m just hoping the rheummy will come up with something because it’s really bad at the moment and I’m not coping well this week.

Thank you for your kind message xx

[Crazy_Cat_Woman]

Hi Baba, I don’t think I have been tested but I will certainly add it to my list of questions for the rheummy. Thanks for the information x

[Chanpreet_Walia LUPUS UK]

Hi Crazy_Cat_Woman,

I am sorry to hear that you are feeling poorly at the moment.

According to The Lupus Encyclopedia, there are several different reasons why you may be experiencing pins and needles in your hands;

1.Peripheral neuropathy is a common nerve problem due to damage of small nerves of the legs and arms. It common causes gradual onset of decreased sensation in the feet sometimes follow by similar problems in the hands. Sometimes the person will notice a burning sensation or “pins and needles” as a result of this.

2.Raynaud’s phenomenon can cause extremities to sometimes change colour, become painful and cause the person to experience a ‘tingling’ sensation. To learn more, visit lupusuk.org.uk/coping-with-...

3.Polyneuropathy typically affects the nerves that are responsible for sensation and feeling things. Damage to these nerves can cause numbness and tingling of the feet more commonly than the hands.

Stress is an important trigger of lupus, if you feel you are not fit enough to return to work in May it may be worth talking your doctor.

You may find our blog post on stress management and relaxation helpful - lupusuk.org.uk/stress-manag....

Also, you may want to take a look at our blog post on managing finances, there are some helpful tips and information on how to budget and save costs i.e. on prescriptions; lupusuk.org.uk/managing-fin...

Good luck with your appointment, I hope it will get you one step closer to finding out what is causing your symptoms.

[Crazy_Cat_Woman]

Thank you very much for all the information. I will go and have a good read through the web pages you suggest xxx