Fellow sufferer

[puzzles65]

Hi everyone, I'm very new to this app. I have been reading through some comments and thinking OMG thats me, I've got that, that happens to me...…..I suffer, really do mean suffer, with RA and OA along with Lupus....its been a long time....sometimes I find myself thinking is this pain/discomfort real or in my head.....I'm taking a cocktail of drugs, some already mentioned in the comments....I also purchase any aid, gloves, socks, stockings, oils, vitamins...anything I think might help me get through each agonising day.....Ive had RA and OA for over 20 years, the Lupus diagnosed only for about 3 years, but reading up on symptoms I believe I have had it longer....looking forward to swapping comments with you all

[Peppytea]

Hello lovely l puzzles65 💗

Welcome to our lovely forum! You’ll meet a really wide spectrum of people here and it’s wonderful - it’s been a real outlet for me when no one else believed I was sick.

I just wanted to say how funny it is to hear someone else comment that sometimes they think it’s in their head too - I do exactly the same! It’s so weird. Particularly if I am having a good run of a week or so of mananbable pain. But when I’m laid in bed and all I can do is cry, I remember how bad everything has all gotten.

I’m so sorry to hear you’re suffering and have been suffering for a number of years. Do you have a good GP and consultant to guide you? Do you feel like your illnesses are managed?

Anyway, as I said, everyone here is absolutely wonderful. So many different people with different knowledge and different experiences that there’s always someone who can help. I’ve found it a life savour to be honest. I hope you find it just as lovely and helpful ☺️

I hope you have a wonderful day dear. Take care of yourself 💖🌟

[puzzles65 in reply to Peppytea]

Hello Peppytea, Thankyou for your reply....I am having my good days at the moment, hopefully it will last for few weeks this time, I have a terrific consultant who is marvellous with both my Lupus and RA, I see him on regular basis, we discuss all details together making decisions together on what to do next, its worked for past 20 odd years....so I have to say my illness is managed quite well. My worst time I would say was when my long hair started to fall out, I was so stressed but eventually had it cut and styled, I now love my new "Look".....

Doing a little each day instead of trying to do everything all at once helps too, your body will tell you when to stop, dont push it too far....its the only one you've got.....I'm looking forward 'learning' about how other people cope/treat this illness and meeting new friends

[Jennifer251]

So sorry to hear your conditions, it's seem to hard to live with a wide range of these health conditions. But I see that you're optimistic and deal with the conditions comfortably. Thinking positively is one of the best ways to can overcome these disorders. Keep moving and hope you get better soon

[puzzles65 in reply to Jennifer251]

Thankyou for your reply, I think I have realised how my everyday life should be now...I do what I can when I can, anything not done can wait till next time. I do however have a wonderful girl who helps with heavier jobs that I cannot manage, do you suffer with Lupus/Arthritis? and how do you manage your life now?

[Jennifer251 in reply to puzzles65]

I've been living with lupus for nearly 3 years. Initially, I felt really terrible and was stressed out because of many lupus flare-ups. But, everything is fine now. I try to go to bed early and take rest when I'm tired. I also learn how to share my troubles and ask for help when I need , this helps me avoid pressure and stress very well. Moreover, I do aqua therapy to reduce joint pain and inflammation. Having a well-balanced diet and taking extra vitamin, supplements, like vitamin D3, Lupufree, and iron supplements help me much in reduce fatigue and boost my overall health. Thanks to making lifesstylechanges, my lupus flares have been controlled well.

[puzzles65 in reply to Jennifer251]

Good Morning Jennifer251,

reading your comment I seen myself, I do exactly as you do, rest when tired, do what I can do when I feel better....It's really a matter of adjusting your way of life to suit the condition, all just takes time. I have been changing my eating plan also, taking Gluten related products away, reducing carbs where possible, sweets/crisps/chocolate fortunately I have lost any notion for which can only be a good thing.....Lupufree is not something I am familiar with, I will make a point of researching it though a,s,a,p….. I have lost about 4 stone now , and I feel a great difference in my pain level now, but do still have very strong painkillers in my cocktail of drugs....

enjoy your day x

[Tiras]

Hello;

Welcome to our family. You will find that a lot of us have similar and completely different symptoms. We can give you our experiences and what we have done, however, with Lupus what worked for me may or may not work for you?!

Always consult with your physician before you try something new!

Here are 2 mottos I have, maybe they will help get you through?

“Lupus is different for everyone, yet it is the same for everyone. That doesn’t make sense but, neither does Lupus”

AND

“Lupus has changed my life, but, I will not let Lupus control my life”

Wishing You The Best!

[puzzles65 in reply to Tiras]

Thankyou, love your mottos, they say what I believe in my mind....before my diagnosis I hadn't heard much about Lupus....now if I have new symptons or queries I do contact my consultant but must admit I also have purchased some books to look things up on.....can I ask how long you have been diagnosed?

[Krazykat26]

Hi puzzles n a very warm welcome from me 😺xx

Isn't this cyber thingy marvellous? This is a wonderful forum..full of tips, info,advice, n comradeship from all us lupies..n it sounds as if u have lots of experience to share with us who r relatively new to all things autoimmune!!

I'm sure that u like me will have many eureka moments..sometimes I think of a question in the evening n think I'll post that some time n the next morning someone else has asked what was on my mind!! What's that all about?? I have learnt sooooo much from all the wonderful people on here n because of that I have a better quality of life living with lupus..u might have to change your name from puzzles to 'enlightened' 😸xx

[puzzles65 in reply to Krazykat26]

Hello,

Thankyou for your reply, everyday is a learning curb, now that I have found this forum, I think there will be a lot of helpful answers for me and perhaps some answers that I can help someone else with....I wonder do you or other Lupies get told when outdoors how well they are looking when inside they are having their worst day ever? I have made the promise to myself that no matter how ill I feel I will always dress nicely and keep my hair(whats left of it) tidy...….no point letting yourself go just because you have this horrible disease......

[Krazykat26 in reply to puzzles65]

I'm the kinda gal whose a natural lady..I haven't worn make up for years n I now keep my hair very short..I'm generally shabby chic!! That's what I call it anyway 🤔

Friends have told me I look really well..since I've been on steroids!! So I guess that I looked like 💩before!! I don't get out much but I really don't give a damn what people think because I'm just happy that I've managed to get out the door..it takes me a long time n loads of energy just to get dressed!! Xx

[puzzles65 in reply to Krazykat26]

Hi there, I've been to the hairdressers this morning, short cut and a new full colour, sadly they couldnt do anything with the face lol.....but I'm feeling good....I am having my good times just now, still in pain but more able to get about for now....sometimes when people say how well I look , I feel like saying not on the inside I'm not, but they dont know what we go through and the compliments are really nice to get.....on a good note I have lost another 4 pounds this week, every little bit helps ease pain just a little...….

[Krazykat26 in reply to puzzles65]

That's it!! You look fabulous!! N when people tell u that just take the compliment n say 'thank you'!! If I feel bad I don't go out..end of!!

Noone who hasn't got lupus will understand so there's no point really saying anything except thank u...reserve your energy/spoons r precious!!

Happy u enjoyed your trip to the salon 💆💇xx

[puzzles65 in reply to Krazykat26]

Do you find it difficult to explain to non Lupus sufferers how you feel on a bad day? My best friend of over 40 years just doesnt seem to understand at all.....but also doesnt seem to want to know, it can be quite frustrating at times, I now just dont say anything to her.....besides I'm the important person in my Lupus ,RO, and OA life and the only one who knows what I go through so I'll just get on with living for now......x

[Krazykat26 in reply to puzzles65]

Have u seen the spoon theory by a woman called Christina someone..can't remember her surname 😕..she's written a piece on living with lupus n how she explained it to her friend..if u Google 'Spoon Theory' it will come up n u can have a look n see what u think.

I found it really useful for letting my daughter's know how it is without me having to explain..or moan!! I think it's mad when people say 'hi how r u? ' when they really don't want any other answer than 'fine thank u...and how r u? Waste of breath!! 😹Xx

[puzzles65 in reply to Krazykat26]

Thankyou, I will look that up.....

been nice chatting to you today....time to look out something for dinner, like it best cooking on Tuesdays when my grandson comes for dinner....Take care catch up again soon xx

[Paul_Howard Partner LUPUS UK]

Hi puzzles65 ,

Welcome to the LUPUS UK Community Forum. I hope that you'll find this a helpful place for information and support and I look forward to chatting with you more.

If you need any additional information about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...