Current situation: I post here as a useful reminder tool, sorry if I bombard you with my rubbish
Burning red lumpy skin rash on face , red rash on chest. Livedo is extensive on backs of arms and front of legs. Extreme pain in my lower back, waist area. Pins and needles in hands and feet, pain in both knees . Literally dragged myself up the stairs to bed!!!!
Now i know posting here won’t solve my current situation, but feeling like this makes me think how on earth can these specialists leave you 6 months between review appointments???? I know I’m fortunate to have the nhs and I really don’t take that for granted, but if right now I’d broken my legs the hospital would treat you, but if I turned up like this would I actually be taken seriously? 😔. Who’s knows. I couldn’t get there even if I needed too.
This episode most definitely is linked to sitting in the sun shine for approx 20 mins. Can’t enjoy winter as it hurts my hands too much
Can’t enjoy summer because it hurts my feet too much. Maybe living in a cupboard is an option 🤷♀️
Too all your fellow warriors, I honestly think your made of steel because these symptoms are some what challenging and really test you,physically, mentally and emotionally!
Written by
Lisalou19
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Hi Lisa, I share your pain and frustration. I feel same as you. Do the professionals really know how hard this is for us??? How do we convince them how much we struggle?? Same here, joint pain, swelling, mouth ulcers, fatigue🙄here we go again!! 🤗 to you
I’m sooo sooo sorry that you are suffering so badly. I understand the agony this throws your body mind and spirit into as I have many overlapping incurable life long conditions myself that when they all act up together I often pray for death to end my agony. I am only taking Gabapentin for my painful nerve conditions. I cannot tolerate pain meds so I just have to grimace and bear it. My face has deep furrowed lines due to all of the grimacing I’ve done since 1992.
💗🦋💗🦋💗🦋💗🦋💗🦋
Are you taking any pain relief meds to aid in your ordeal??
Have you ever tried doing something to distract yourself during the worst of it all???
Example: calming music or nature sounds as biofeedback therapy... watching a feel good movie...crossword...word search...or picture puzzles...lavender essential oil diffusers as scent soothing therapy...soaking in Epsom salts or lavender baths...having a friend or close family member over to chat and comfort you in your time of needs. Do a hobby if you can anything that will divert your awareness of your flares that you will enjoy would be helpful.
There always is this site.
Someone will respond and at least send you love compassion and cyber hugs as I will do now.
🌿🌸🌿🌹🌿🌸🌿🌹🌿🌸
I’m so sorry you’re in agony. If I had a healing wand🥢 I would heal you in a heartbeat but because I don’t and can’t do that I am empathizing with you and send you love gentle gentle hugs and prayers that you will get relief soon dear.
I’m in the USA 🇺🇸 over here we have a cream that is a pain reliever with a numbing agent lidocaine. I use this when the burning is unbearable.
Check with your chemist and see if there is something similar and give it a try if available. It really helps my burning pain in my spine and feet
I’m sooo sooo sorry. I know that give up feeling all to well
You can always chat with me when I’m not catnapping or busy with the few things I can do these days I will answer you ASAP.
I’m the meantime take care and hang on to my cyber hand 🤝 and I’ll try to comfort you as best I can. Being this ill really stinks but it’s all we have and must make the best of it alone or with a friend.
Lisalou never be afraid of asking for help or letting someone know you need something. There are plenty of people in this world that are truly earthly angels 👼.
They are eager to help if only you let them know you need it.
I have been diagnosed for over 5 years now and I think I still get days when I get frustrated, upset, angry with myself and annoyed that I am ill and cannot do more.
Very early on in my diagnosis, a work colleague (haven't worked for over 2 years now) said I am amazed at how quickly and how well you have accepted your diagnosis. Which was one of those lip biting moments, where I replied, well I have no choice and it makes sense of all of my symptoms.....It did make sense of all of my history etc but now I think that you never really accept it the new you. That was very early on in my diagnosis and you cannot really comprehend living with an illness for the rest of your life. It does wear you down. The new you is so different to the old you.
My lupus is fairly well controlled by drugs and life style now. And I can't really complain at all. I know that many others are far worse off. I still get the odd flare and I suffer fatigue every day and hide from the sun when I need to etc. But life is never the same again.
I think one of the hardest parts is that it is an invisible illness. Like you say, if you broke your leg or had a heart attack and needed a stent etc, the doctors and hospitals know what to do with you and wouldn't leave you like that, they would treat you immediately. It's different for us.
We have to deal with the illness and all it throws at us plus we have to accept that others will never really understand our illness or how we feel, because it cannot be seen.
There are days when I look rough and you can see I am ill, but none sees me like that generally. I'll hide at home or take to my bed. So friends and most of the extended family would never see that side.
I cannot remember if you are newly diagnosed etc but I hope this rough spell is a short one.
Just out of interest, do you have a Rheumatology Helpline that you could phone for advice? If you are having a flare, they may be able to help you.
I do have the option to speak to a nurse, but she’s not very helpful.
This is my 3rd attempt on taking hydroQ and of course it’s not in my system at the minute.
I’ve not worked since January, and I think that something I needed to do for a long time .
As for excepting the new me, that is something I am really struggling to accept. I guess why I keep getting like this it makes it harder to accept. I hope one day I can start to get some stability in my life.
I won’t face the world today, like you say others don’t see you when you are this bad so do not understand it.
I want to just close my eyes and rest but my neighbors are building and the noise is hurting my head and ears x
Sorry you’re having an awful day! I’m still in bed (how awful!)...it’s 10.30. Is there a calming cream you can put into your skin? I have throbbing burning feet and have a mint cream that came from podiatrist and really helps. You are so right about the doctors. I’m on a clinical trial at the moment, and it means I get checked every month. If it wasn’t for that (although know I’m getting the placebo...unless belimumbab makes you feel worse!!) I’d see the rheumy every 6 or 12 months. It’s not enough. Do ask for help. Although i didn’t tell my friends for a couple of years...and now they know, they always tell me how well I’m looking?!? But...they do know...and would rush to help if I asked. Sometimes because others don’t understand how awful this is, they don’t know what to do to help...and need us to ask. Be good to yourself today! Sorry, just read this back and it’s very badly written, but too tired to change it! 💤💕
You get the painful feet too? What is this all about. I don’t want to put shoes on at the moment, and as for heels those days have gone 😔
I’ve got an immune suppressing cream to pick up that I can apply directly to my skin, this will be the first time trying it. Fingers crossed.
I’m starting to learn how to ask for help. I have too as my sons school is on my back due to him not attending when I’m unwell. I’m a single mum so it’s all on my head for him to get there.
I don’t really like telling people I’m sick as I don’t want there sympathy which is a natural response from others, I just need help 😣😣😣x
I too have the extremely burning and thriving feet. I too have my son’s school on me regarding his attendance. Hate to admit this but I've also had to cancel doctors appointments because I felt so horrible and unable to drive.
I’m lucky I suppose (I used to think it was the worst thing in the world) because my boys are at boarding school. I dropped them back last night...and after 2 days of washing, ironing and packing...and a month of trying to be ‘perfect mum’, and a 5 hr round trip I’m completely done in. But...the upside is that today I can fall over...and I have! Can you get someone to take him to school? Can you rest when he’s there? Please just ask...people like being helpful. I know that we hate showing that anything is wrong...but it is...and you need help. Yes, the foot thing is horrendous. I feel like someone has been hitting the bottoms of my feet with a baseball bat...and now they are throbbing and REALLY painful, particularly at night..but often all day too. Good luck with the cream. It would be great to find something that really helps. Doctors just Ignore the foot thing...apart from saying it’s probably something like Raynaud...but hot instead of cold.
Have you told your sons school that your sick? They might make it easier if they know?
Hi Lisa, i really feel for you. Sending gentle hugs. I use anaesthetic cream called anthecaine or calendula (marigold) cream as it is cooling & refreshing, some suppliers have trial sizes. With your whopper of a rash, a second opinion sounds appropriate in you case. I used to work under Mike Shipley in 90’s at the old Middlesex Hosp in London. I know he still sees Pts @ UCH, not sure of your geographical location but he was lovely and a gentle giant. Our Pts sure loved him.
Foot pain is something else entirely (even on carpet with double underlay i feel like i am walking on a pebble beach). Use sheepskin slippers with plasterzoate insoles (ask podiatrist), i found Hoka recovery slides (summer) and Oofos recovery shoes (winter) have super cushioning, a bit expensive but I don’t wear anything else now. They are made for marathon runners to help their feet recover - i found them by slipping on a pair of hubby’s. I loved running... was a sprinter at Uni, but those days are gone. Hubby does 5-7 marathons a year, i think it helps him release frustration as it cannot be easy married to someone who rarely goes out (vampire wife) or does anything more than attend appointments and fight with the NHS.
As for heels (my nickname in the family was Imelda Marcos), i lie in bed and salivate at them... i always plan on losing weight and being able to wear them again... a little denial is always good in my view... 🤣
I replying to simply tell you how much I agree with what you said. I live in an area where the temperature is 85-112 degrees for 8-9 months out of the year and 40-70 degrees for the remainder. Not only do I get the rash and deep boil-like pimples (but they're not) if I go outside, but anytime I'm inside and I get too hot I get the same symptoms. I think the cupboard idea MIGHT be the only way to live a healthy life, not what I call living an enjoyable life.
Totally know where you're coming from..bless ya heart!! 💐🤗💐🤗
I get the same..soles of both feet n palms of both hands..how can a gal function like that? All u can do is rest..this is when we r warriors summoning up what strength we can to try n fight the inner wolf!!
I have a mantra that I use n believe me I have cried this out so many times..but it does help me to focus on recovery;
Every day
In every way
I AM getting better n better.
When my feet burn really bad I get a plant spray bottle n put some water with a few drops of lavender essential oil in..give it a shake n keep it by your side..when feet get unbearable..give them a spray..lavender helps with burns..shake the bottle every time u use it n u can use it often.
I used to take cocodamol but my GP changed it n put me on tramadol..it really helps..I only use it at times like your describing though because they can be addictive.
When I flare the usual procedure is increase in steroids..maybe u could ask for a short course as u have said that they've helped u before.
Hey, sorry your feeling it lately.. That's a long time to wait isn't it 😏. I'm struggling with fatigue at the moment and a couple of new thing! Itchy skin and mouth ulcers!! Just pain in my shoulder blades at moment not everywhere..
Sending you lots of positive vibes and a cyber ☕ 👍Take care x
I’ve literally done nothing today. I’m not feeling sorry for myself, I’ve just been in such a trance!!!!
I’m quite fascinated by how many of you suffer this foot problem!!! Honestly the pain is unbearable. I have my electric shitzu foot massager that really helps and sometimes resting them in cold water. Thank you for giving me some reassurance that this does happen .
I’m going back to the doctors Monday morning, I honestly can’t do this anymore. I feel as though with each flare my body is being attacked more vigorously. I literally can’t stand up properly due to this pain around my waist!!!
My son is 5, and bless him he bathed himself this evening as he can see I’m as he calls it “not working properly “
I just don’t want my children remembering me like this 😔.
Quite frankly these diseases are god dam cruel and are ruining my whole purpose of life!
Tomorrow I pray for a better day not just for me but you also xxx
💕☹️...you’re so right. We don’t want our kids worrying about us/remembering this. I’m supposed to be at a 50th birthday party tonight in London, and my boys (despite not being here) have both switched on to the fact that I’m at home, and not there. Have told them I just have a headache and didn’t want to go. Pretty sure they know better. Anyway, hope you’re all ok tonight. I’ve got my feet wrapped in iced towels. It feels nice! Looking forward to some painkillers and bed. Sleep well all. X
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I think i'm in love with my steroids!!!
Losing my Mind with this pain and not knowing what to do...feeling isolated in this world!
Some things that have helped relieve my symptoms
Help: need to find a computerised way to keep live records of my lab test results 
Today I feel worthless. 
