Hi all
I’m glad I’ve found this forum, I was diagnosed recently after a long battle of tests and different referrals. I was just wondering if anyone had any tips of relieving any pain they have???
I turned 30 last week, and no friends or family understand when I say how tired I am or when I’m aching and I’m in pain, I always get “oh me too”. They don’t get how it’s different. Need people that actually get where I’m coming from.
Sammy, welcome! You have come to the right place! This is a place of warmth, understanding, and friendship. There are many wise fellow Lupies here too (I’m not one of them) who can give you great advice.
In the meantime, my only suggestions would be to be patient; the doctors will be keeping an eye on you but things will take awhile still, and be patient with yourself and your body. You are going to experience a lot of ups and downs and will do best to learn to roll with it and not get too frustrated.
And ask a lot of questions; the what’s and the whys. Especially the what’s, as in, what are the side effects of the treatments the doctors will prescribe you. Keep a folder full of all your test results and notes and questions.
And more than anything, remember this is your body and your life. You are in charge so you get to question, and you get to make the final decisions. Don’t let anyone push you around. If they do, get a new doctor.
Sammy, my best wishes to you. Next time you are at the rheumatologist pick up some pamphlets for your family to read. Maybe that will help them understand. Print up things you google off the internet. Have a heart to heart. It’s difficult because we don’t want to whine, nor do we want to worry our families, but, you’ll need their support to help you see this through. They can also help remind you of what you should eat and what you should not eat (many foods help the inflammation, and many foods are like poison to us), supplements you should use, etc. Get them involved.
Wishing you the best. 🙏
Hi Sammy8910, as Dr Michelle Petri director of the renowned Johns Hopkins Lupus Centre in the US wrote "Our patients........have pain and fatigue that cannot be described". Your doctors and by that I mean both your consultants and your GP should be helping you with getting on top of both these symptoms so that you can function. Sometimes you need to communicate persistently to get the pain relief that you need. My advice would be that it is really important to get on top of your pain so don't feel that you are being difficult. With very best regards, Lily
Hi Sammy and welcome,
Brookesidecourt is very wise, as is shown by her reply 
Look after yourself and although having lupus can feel very lonely at times, you don't have to be alone.
I found the fatigue one a tough symptom to explain to friends and relations. My 70+ yrs mum who lives alone and still working looked at me with disbelief that I could possibly me "more tired" than her.
What really helped people get it was the "spoon theory". Google it. It also really helped me when fatigue was bad.
Pace yourself and don't get angry with yourself. You have lupus, but you're not lupus.
X
Hiya yh i kno how u feel i have been recsntly diagnosed with lupas and arthritis i am 18. To relive pain i just keep having my parcetmol and codine and hot showers makes me relax and hot water bottles coz i always feel cold but yeah x
Hi Sammy I guess we all was in the same boat before and after diagnosis. You'll pickup some great information along the way which will help you too manage your symptoms. Loved ones will soon realise your health condition don't be down hearted most of the time we want them to hear us which makes it difficult for us. You need to focus on yourself, getting all symptoms under control takes time this is the best place as you'll never get any negative feedback so ASK away!! 😁 take care x
Hi Sammy 💐
A very warm welcome to this huge family!! We all understand u.. you're amongst friends here..living with lupus 24/7!!
I'm glad u found us too 🤗
Definitely Google the spoon theory..I used it to explain to my friends n family..now they get it!!
Lupusuk check out the website!! It's full of information n advice about all things autoimmune!!
And of course post questions here..we all support each other wherever possible..this is a very active site which is remarkable considering how exhausted we all r!! 😹
U R NOT ALONE!! 🤗🤗
Kat 😽😽 xx
Hi Sammy
I’m new to the Lupus forum and have only recently been diagnosed.
What I have found is I’m almost trying to support my family through this rather than the other way around, but I’m trying to put my need for rest first when I can.
Unless you have lupus I really do not think anyone will understand, especially as sometimes you do not look unwell.
Do what is best for and understand that people will try to understand and most come from a good place Xxx
Hi, please take time to resting more often during the day, reduce stress, stay out of UV rays, eat more fruit and vegies. It helps me & hope it will helps you too with fatigue.
Good luck
Hi Sammy8910 ,
Welcome to the LUPUS UK Community Forum. I hope you will find this a helpful place for information and support.
We have an article on our website about pain management which includes some personal experiences and advice from people with lupus - lupusuk.org.uk/pain-managem...
If you need any more information about lupus and LUPUS UK, we have a free pack which you can download or request from our website at lupusuk.org.uk/request-info...
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