Sorry it’s an essay ! 🙄 I don’t ever complain but I’m feeling low.
Im in so much pain with my joints ! Have physio taped literally each one last night.
I’m having a big flare up at the moment not sure if it’s my lupus, sjogrens or RA.
I have big round red angry circles all over my legs and lower trunk area, about the size of a large coin each with slight scale feeling. It’s on/across my nose chin in my eyebrows. Not itchy they just grow. Dermatologist said it’s due to UV allergy ,it’s been freezing and miserable I’m in UK, I’ve been wearing 2 layers of clothing when I do go out, which is rarely and I don’t walk around outside,I’m usually straight out of car into the shop. So I don’t think it’s a UV thing . I do have a emergancy access to him if these come up again so he will take a biopsy to see what if def is but you know when your in so much pain you just can’t cope with it,plus I can’t sit for long as my coccyx is crumbling.
The pain has been so bad with my joints I’ve had codeine, paracetamol, oramorph in the night , which I haven’t taken regularly since the infusions. (Can’t take anti inflammatorys due to only having one dodgy kidney left.
(Alot of my organs are damaged) I’m on monthly bio infusions which have changed my life so much , no stick or wheelchair anymore. I’m just hoping so much that it hasn’t stopped working and this is just a flare. As because of the lupus Rheumy said I can only have option of 2 bio infusions as others will actually flare the lupus which could be bad. I had a bad reaction to the other one. So I’m frightened to say to her, I’m suffering at the moment incase she takes me off it and I go back to being stuck in the house all the time unable to be with my family as a normal mum again. I haven’t slept properly for days apart from little cat naps, my spine is so bad and also my coccyx is damaged so I can’t sit for long . Advice was try not to sit for long but standing is bad as my feet are constantly numb and tingling at the moment. Consultant was going to put me on drugs to open up the blood vessels but that would increase my heartrate and with it bad anyway with my reoccurring pericarditis attacks I have drugs to slow my hearate down so they would work against each other. ( I sure it’s not vascular damage in my feet as I have regular checks by my vascular consultant due to having a mid Aortic graft fitted and a bypass to my last kidney (after left one died and was removed) all when I was 27.
Its making me emotional and frightened of going back to those bad times were I was stuck in my bedroom for 6weeks as couldn’t get down the stairs in my town house. I can handle the organ issues more than my joints seizing up again , that pain was unreal.
I’m sorry I’m just feeling sorry for myself and don’t want to put my worries on my husband and children. They have been so amazing over the years , I’m only 42 and just want to stay like I was with the infusion not getting pushed around by my kids in a wheelchair again or husband helping wash and dress again. Just last 2 weeks things seem to be getting worse again. I’m even finding I’m taking it out on my husband as he just doesn’t understand what I’m going through and how bad the pain is. ( but how could he)
Anyone had this happen with their joints and then picked up again after a bad flare ?? Just need some encouragement, I’m a strong woman and a fighter but feeling low at the moment. I’m just so tired & exhausted .
Thankyou all , I thought I was over all these problems.
Mellisa 🌸
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Mellisa1066
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Wow, you have been through so much! I can't imagine how much strength it must take o handle all that and be mum to your children too. I've been feeling sorry for myself this morning - and its just me and the cat!
It is awful when you feel like you've cobbled together some sort of life, only to find things coming apart again. On Wednesday, I managed a trip out to see a friend, and afterwards felt so chuffed - maybe I've got this thing at last? Then yesterday, I got a sudden return of my shakes and sweats and was entirely unable to sleep last night - so I'm also sitting here with that dread feeling, and the thought that maybe things are never going to get better....
That's no use to you, is it? My first aid kit is watching the birds in the garden (a Kite has just sailed overhead) and poetry* Here's one I love - "Wild Geese" by Mary Oliver
You do not have to be good.
You do not have to walk on your knees
For a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about your despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting —
Your all so wonderful sorry for late reply I was so low , I couldn’t cope with even looking at my phone or talking to anyone. I’m starting to pick up now , Consultant is doing an MRI on my spine and a lump on my back , so may find out something to help some of my pain.
Just wish I could be strong all the time but sometimes you just find it so hard ( I think we all have that, some days are just too much !)
I’m doing better mentally at the moment and had a good talk to my husband about how I’m feeling. He is such a lovely man and has given me 18years of love and support just wish I was able to be the woman he married and the mother I used to be. I will get there 😊👍
I don't have many words for Everything you are going through. But I think you are strong for sharing and opening up and looking for support from the group. Sending you hugs and wishes of some, if any, relief.
I want to hug you too! I’m currently in the middle of a flare with terrible joint pain and can only sleep on my stomach as every other position makes my joints ache terribly. But it doesn’t sound nearly as awful as what you’re going through, you poor soul.
Sorry for late reply unfortunately I went downhill a bit and just couldn’t cope with anything. I’m sure you know how that is !!
I’m picking up a bit now just more tests and hopefully they can help more damage that they think I have. I’m getting a lump on my spine MRI checked could at least be the reason for the spinal pain which would be great to get one area of pain sorted.
Hope your flare is picking up 💕 all your support on here kept me going and still does. I’m sending you a healing virtual hug. I’m here for you all too, supporting each other on here helps so much , only someone going through the same types of pain understand what we all go through.
Gosh you’ve been through so much and can completely understand the dread of the bad times returning. I think the fact that you’ve had some good periods in there where you’ve felt better is really positive for it happening again where you get good phases as it seems some of us have a more relapsing/ remitting type of autoimmunity?
What biological are you on? I’m not sure I understand why your rheumy said more would flare your lupus as many people with lupus are now also having biological therapy (rituximab or benlysta usually I think) and finding it controls their symptoms. I’d be honest with your rheumy about how bad you’re feeling. I was feeling I was running out of treatment options so was trying to underplay my bad reactions to the drugs but realised that wasn’t wise as we need to tell them everything so they can help us.
It’s horrible feeling a bad flare is coming and must be worse when you’ve been through such bad ones 🙁 and in such pain. The guilt we feel as mothers is the worst part of it for me but our children will grew up kinder and more resilient.
Lots of love and I so hope this doesn’t turn into a bad flare
Thanks for your kind words. I did try Rituxamab first but had a severe 😵 reaction to it . Then waited 6months and then Rhuemy said there was only one more Bio for someone with lupus and Sjogrens could take, as it helps the arthritis but creates more flares with the others. I’m on Abaptacept now for over a year. I know you can use belimab I’ve read too but it depends on where you live if they will offer certain drugs . The NHS has protocols as you know , that they have to follow in different areas unfortunately.
I have lots of consultants and Doctors in the family on my husbands side but you would be suprised most consultants lack of knowledge on bio drugs !!
Even my 7 Consultants for my different organ damage know little. They also often just say not much we can do but patch you up and everything is always just blamed on my autoimmune diseases.
My Rheumy also is the only consultant at my hospital who has ‘a special interest in lupus & Sjögren's’ So not sure if I may try another hospital for a private app near me that is a center of excellence in lupus and all Rheumatology diseases. If they are good then I would get transferred.
So my plan is speak to my Rheumy consultant first if she just stops the drug as not helping as much ‘ due to protocol, money if drug not working to full potential’ Then I will go to the other hospital an hr a way that is specialised in lupus etc Just don’t want to do that unless I have to as my Rheumy does what she can for me.
Im not doing too bad at the moment still having a flare just different areas.
Doing better now mentally now I have a plan.
Just need to get this lump on my spine MRI next week then I can start my plan of action.
Thankyou again for your kind response it helps so much getting support from others that understand your pain.
Like my gp said to me recently, u can still have these break through flares even tho u are on the medications. It’s like if u have treatment to prevent migraines, u may still get the odd one.
Sending positive thoughts and big hugs your way. I’m sure it’s just a flare up and you’ve just got to get through it and I know it’s hard but think positive.
And I know it’s hard but talk to your husband, he’s probably gathered that your not ok at the moment but is in the dark probably feeling lost as to how he can support or help you. Tell him what you told us.
One of my bad nights last week when I couldn’t sleep, I wrote on here my thoughts and feelings. In the morning when I picked up the courage I showed him what I wrote, it was easier than saying it. He looked at me with such sincere eyes and thanked me for showing him and finally sharing how I’m really feeling. The relief of finally opening up. Plus he knew how to help me or when not to help me lol.
I can't possibly imagine everything you are going through except the pain part and the frustration of being fed up and your family feeling helpless. But I just wanted to send love and hugs and to let you know you are whole heartedly supported by many people and you are not alone. Stay strong, the flare up will pass and try (I know it's so difficult) to not think ahead of things that may or may not happen as stress and worry can make symptoms worse. Be kind to yourself. Xxx
I can only say what a strong persyyou must be to keep going on through so much. I salute you. Sending love and light and hoping there is some much needed light at the end of the tunnel soon for you. 💕
I suffered the disc rash, joint agony, utter fatigue, sinusitis, antibiotic prescriptions on repeat, a couple of years ago. That period of ill health, I will never forget. My bed was downstairs. I could not stand,chalk, wash, shower by myself. I was dependent on my husband.
I want to tell you. I did recover that very acute phase. I did learn a lot over the next year. I realised my husband did not have the skills to help me. I joined HU, sjogrens support BSSA, and thyroid UK support groups.
I'm not going to lie. My body had suffered so much, my pharmacist explained it would take a year to recover. Slowly, but surely, I started to improve.
I was diagnosed with Discoid eczema. I use topical creams, lotions potions steroid creams every day. I manage 99 percent of my skin volume. I take supplements for my immune system. I walk. Practice mindfulness, give thanks, pray, eat gluten free nutritious food, drink 2 litres water. And, finally, trust my medics. Any medic unable to help I walk away from.
I take codeine 8/500 and use Better-U magnesium spray for joint pain.
We are all different and what works for me, may not suit others. But, don't give up, each day comes to pass, tomorrow brings hope of a new and better day.
I wish you well. Be good to yourself. Let people help you through this.
The poetry, whispering sent, was beautiful. Ponder on such words.
With love, and respect for what you endure. Thank you for sharing. Xx
You are completely in the world of pain right now! I’ve been there, but not for a while. The pain in every joint is etched in my memory it’s not only how much it hurts but how relentless and seemingly endless it is. I’m 42 and have two little children, my husband has been with me from before I was symptomatic, through the diagnosis and was with me when I had cerebral lupus and was sectioned. Your man loves you, like my old man does. He can take the snips and frustration you’re throwing at him. I wish I could suggest some medication that you haven’t been on or some magic herbal bean that makes all the difference, But you’ve got the right people looking after you by the sounds of it. You’ve got through this before? This times different, every time is different but there is every chance that your flare will calm down. I saw Professor Hughes when I was first diagnosed and he said that lupus generally is less aggressive once you enter menopause which always gave me hope when I was in despair. As you said your strong, I’m sure no one doubts that. Allow yourself to be vulnerable for now you need the help and feeling sorry for yourself right now is absolutely legitimate. Then pick yourself up as you’ve done before. My heart goes out to you. X
Thankyou for your kind words 💕 I will get there and strong again.
We have all been there with our diseases but just so kind to have such wonderful people like yourself, sending kind messages makes things a whole lot easier mentally.
I checked this site as I’m feeling just how you are feeling. That strong fight mode has gone which is normally there. People say im strong, but I’m not I have no choice but to get on with life.
When your feeling this low, you try to work out how you managed before or how you’ve got through it before . The answers are not there, if they was you’d be fighting through it this time.
How to cope during these defeated moments, I really don’t have the answer to that, but try to remember how strong you really are!!!!!
During these times for me I also try and keep the brain as occupied as possible, listening to stupid stories through my ear phones , rubbish hypnosis videos on you tube, anything that stops me from sitting back and listening to my own negative thoughts.
I’ve said before it feels like bipolar, your good days are good, and them bad days are bad.
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