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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Oh my Melissa you are in a bad way darling,first i would tell your husband as he can't support you if he doesn't know fully what your going through,second i think he already knows there is something wrong and not telling him will lose his trust in you when you keep everything to yourself. Also let your children know my darling as they too will understand as well and if they know they will watch over you and do little things for you. I suggest you get those marks on your body looked at straight away darling as it could be the cause of all your pain. You could be in a massive flare i am sure of that,so you must see your rheumy as i am sure there is something out there in the ether they can give you to support you my darling and lastly big massive hugs from me with oodles of love my darling warrior.xxxxx
Oh you poor thing. My heart goes out to you. I'm so sorry that you have so much going on. The pain is horrendous isn't it. Just colours everything grey.
I would contact rheumatologist and skin specialist straight away if I were you, though I know when you're so exhausted it's the last thing you want. The skin could be any number of things, so best to get it looked at.
Sorry I'm not much use to you in terms of advice, just thought I'd stretch a hand out for support.
I appreciate all the support from you all I don’t normally reach out to people but I just wanted to talk to people who understand living with these long term conditions . So Thankyou Nettac 💕
My heart goes out to you, what an awful situation to be in. Wish I had some good advice for you regarding your flare but not quite sure how best to advise you to be honest. I'm sure you will receive some valuable advice from the good people on here.
It's so easy to retreat back into your shell, and shut yourself off from the world when you feel like that (I talk from experience!). I have been going to counselling through the pain clinic recently where my husband came along to one of the sessions. He spoke about how awful it was to see me like that, and how helpless he felt. He said it helped him to feel helpful, and for me to tell him how he could help. My kids were 8 and 10 when I had my first horrendous flare, and I've always tried to be honest with them about how I'm feeling. Must be horrible for them to see a parent in that much pain. The whole situation really brought out the caring side of them, and helped them feel a bit more in control. They are so protective of me now, which is so sweet.
I really hope you find some relief soon. Take care of yourself. Mhairi. x
for sharing your experience, I New I needed to see a counselor after I lost 6st from the lupus attacking my stomach a year ago as they wanted to fit a stomach tube into my stomach and with the joints so bad at that point that I couldn’t move alone. I just wanted to give up. I honestly wanted to go to sleep and just not wake up.
But thank goodness I stayed strong and Rheumy put me on the bio infusion and my life changed dramatically . We also found a drug that helped my stomach inflammation and ways around the osophagual dismotility .😊
The counselor ( I had to pay for privately) as I didn’t want to leave the house with the pain and uncontrollable vomiting.
My counselor I found came round my house each week and made me feel like there would be better days and future!
You can never explain how bad join pain is or a flare up to someone who hasn’t suffered with it can you! .I had also settled into a new area so had no friends etc
Even then I’m paranoid of complaining to family or friends on phone as I know they have their own problems , I’m also worried they will just not want to be around me anymore. As I was always know as the fun jokey one always happy , not the mess crying in pain that I had become. 😔
I just don’t want to get to that point again. Im sure things will improve but just having all your kind words and your stories from you all helps, as I know you have all been there!
I don't think it's possible for someone to truly understand just how bad it can be unless they've experienced it themselves. Your true friends will stick by you and support you. My best friend developed endometriosis a few months before I became really unwell and she has been through a horrendous time dealing with constant pain. I can talk to her about anything, and she totally understands. I hope you have someone like that that you can open up to. x
Well what a lot you have going on Mellisa. I agree with Sylvi & Nettac so wont repeat, but I will say you have done so verh well with whats been thrown at you and I wish you someone ( medic ) who will help you. Take care and if you can do something that you like ie reading something that enjoy. Thinking of you.
for sharing your experience, I New I needed to see a counselor after I lost 6st from the lupus attacking my stomach a year ago as they wanted to fit a stomach tube into my stomach and with the joints so bad at that point that I couldn’t move alone. I just wanted to give up. I honestly wanted to go to sleep and just not wake up.
But thank goodness I stayed strong and Rheumy put me on the bio infusion and my life changed dramatically . We also found a drug that helped my stomach inflammation and ways around the osophagual dismotility .😊
The counselor ( I had to pay for privately) as I didn’t want to leave the house with the pain and uncontrollable vomiting.
My counselor I found came round my house each week and made me feel like there would be better days and future!
You can never explain how bad join pain is or a flare up to someone who hasn’t suffered with it can you! .I had also settled into a new area so had no friends etc
Even then I’m paranoid of complaining to family or friends on phone as I know they have their own problems , I’m also worried they will just not want to be around me anymore. As I was always know as the fun jokey one always happy , not the mess crying in pain that I had become. 😔
I just don’t want to get to that point again. Im sure things will improve but just having all your kind words and your stories from you all helps, as I know you have all been there!
Dear Melissa, I feel really moved by your post and want to send all my support to you. I echo what others have said about getting an emergency appointment. We are here to listen and support each other, and yes we are the ones who know how awful joint pain is, which is hard for people without RA to imagine. We are here for you adding all our strength and determination to yours.
we have all suffered with are condition one way or another. It’s just nice to have kind words and thoughts from you all . Makes me feel more positive, as I feel like a weight has been lifted being able to talk honestly about how I feel for once and not hold it all in and cry alone in pain in the night trying to turn over in bed or get up to the toilet ,then put on a fake smile through the day to hide my physical pain from the family.
My husband always says wake me up if you need me but he works hard and pays the mortgage and for everything as havent worked for last 6years with my health ,so I just literally live each day feeling guilty of putting this on him as we have been married for 18years and didn’t start having organ damage etc and go downhill until 3yrs after we were married and it seems like the older I’m getting the more flares I get and when I get flares it seems to do a lot of damage lupus wise. The pain of the RA in the joints gets me down the most though. It’s debilitating I find.
Thanks for your kind words Ruth they honestly mean a lot to feel like people care enough to write you a message. 💕
Oh Melissa my love, what a lot you have going on, it's little wonder you're feeling so low. You've had lots of good advice, I know scant about Lupus so can't relate if any of your symptoms are related but your pain relief, if codeine, paracetamol & Oramorph (depending on strength & your dose) aren't helping you need a pain relief review. I was on max daily dose co-codamol 30/500's, only 5mg 10mg/5ml Oramorph & 20mcg/hr Butec but still had bad lumbar pain on waking. My GP reviewed them & all she did was up my pregabalin 25mg & the difference is wonderful. It's not gone but I can at least tolerate it now & turn out of bed. I'm saying this to relate that a slight change in med may be all that could be to help ease your pain, nothing remarkable but it makes a difference to our mood.
Even though you're under a Dermo & he says it's UV-related you obviously don't think it is, has he seen it very recently, like in the past few days? I must say from your description it sounds like a fungal infection, does that sound possible? Maybe your GP could take a look at it, & whilst you're there you could question your pain relief, maybe even if a steroid injection is appropriate?
I do hope help comes from somewhere & soon, you really need more than we can give. Sending the gentlest of hugs. x
Hello Mellissa I can't imagine how much pain you must be in and are very brace in how you've dealt with what's been chucked at you and as the others have said I hope you get the help you need and get on top of this damn disease, lots of love and hugs xxx
My helpline say ring with flare that lasts more than 3 days: you're well over that. Shouldn't be in so much pain you can't sleep, reminds me of early days, though have nowhere near problems you do. Please please ring them, sounds dreadful, hope you get some relief soon. X
You really sound like your going through it at moment.you sound like you have a good man by your side.i no it’s hard to open up and say how your feeling and coping but you gotta let ppl help.but I guess I should listen to my own words.I hope you can get to the root of your pains. Your not alone.cant say nothing that others have not already said.big hugs from a distance xx
so sorry to hear you are suffering. There is not much I can say except you have my full sympathy. You need to keep family and friends all updated into how you feel. Whether it be in a lot of pain and not sleeping, to being in a good place and enjoying life. I know a bit about pain as I suffer myself but not as much as you by the sounds of it.
Wow Mellisa I feel overwhelmed by your situation just reading it. How awful for you and your family. What incredible courage you have. Please remember this is an easier burden shared. Do not exclude your husband or your children. This will provide them invaluable skills moving forward.
I had a sister with kidney disease starting at age fifteen. Protecting her and caring for her made me a very strong, empathetic care giver both professionally and as a r.
It is so difficult to express how much I feel for you. I wish virtual hugs 🤗 could be real hugs. I sincerely hope the flare ends quickly.
Thankyou for sharing your story with me, I do think that’s why my Children have become so caring but I just don’t want to be a burden to them all . I did chat to my husband last night and told him that I just seem to be making myself worse trying to cover up how I’m feeling physically and mentally with coping at the moment and he seemed relieved that I opened up to him. As he was feeling that I was trying to push him away.
Fabulous , I am so happy you talked to him. I failed to see my error above. I meant to say, the situation made me a better mother.
My daughter is completing her BioChem degree and is going into medical illustration. Making the pictures in medical books 📚
The other consideration is genetics. I had genetic screening done on everyone. For warned is for armed . With autoimmune conditions the possibility exists so controlling lifestyle and diet can prevent a disease from being triggered. Remember, you may have a genetic predisposition but it is an environmental trigger that creates the onset. I believe prevention is the key. All of us have changed our diet and lifestyle. So far so good lol 😂 I want to keep them happy and healthy. I wish your family all the best. The fact that they have such a strong and inspirational mother will be their strength as well. Hang Tuff , remember that the best thing you can do for them is look after you.
Thankyou for your wonderful kind words. 💕It means so much more than you all realise.
Well done for your daughter doing her bio-chem degree 👍🤗
My eldest daughter is only at A levels age at the moment but following the medical side of the family too (at the moment )
She is doing A levels in Physics , Maths & Biology . She not 100% sure what she wants to get into, it was micro biology now there is something else interesting her so we will see.
She is Type 1 diabetic since 2yrs old so I do believe these Auto immune conditions are related to me , even though her team won’t have it.
I did make them test her for lupus etc as she had a lot of joint pain but her antibodies came back fine . I was ok in my younger days too . Think it’s like you said , need more genetic testing.
She ended up being diagnosed by peadiatric team as having hyper mobility syndrome , so hopefully just physio will help her joints.
I bet your so proud of your daughter and what an amazing and interesting job , you forget about all these amazing jobs that are around that we don’t often even think about.
You're so young and have had the works thrown at u, heart goes out to u. I've had flares with the biologic I'm on and have used steroids to get out of them. I'm guessing with your spine u have to be extra careful though...Hopefully yours is a blip waiting for the spring to properly happen and warmth and vitamin D to help.... let your husband and kids help, nothing like a bit of love.🌺
Thankyou 💕I will try my husband is from a family of Doctors and nurses so it’s hard at times, as he has that old school way of his family of just get on with it and that I just need a bit a hard love to keep me motivated when actually sometimes you just need a big hug and support and a good cry 😢
So when I need a push I talk to my husband but when I need a good cry and emotional support I usually go to my mother or a good friend. As they have that softer side that we all need at times. I know I need to stay strong to keep going and I’ve been strong all my life, so sometimes we all deserve to have a day when we need just need a hug and reasurrance.
Dear Melissa, I really feel for you as do many lovely people on this forum. It's hard I know to keep battling through, trying to be the wife and mother that you want to be with a smile on your face. I get it, and it's hard because pain pulls you so low you feel you can't go any further. You will come through it, just take each day as it comes. I had a massive flare recently, like you have other intwined and complex health problems (all autoimmune related). I had a steroid depo to help with the immediate flare and was prescribed nortriptyline to help me sleep as I can't tolerate anything stronger. Not saying they will do the trick for You, but it's worth speaking to your consultant about. The damp weather certainly doesn't help. Don't care what anyone says, I've had this for 45 years now and I can tell you exactly what the weather is without opening the curtains. Think I need to change my profession.
Don't give up, accept the help and don't feel guilty about it. You can do your bit when your back on your feet. Which you will be. Let us know how you get on.
So sorry you’re going through all this Melissa. I can’t say anymore than what’s already been said but I have you in my thoughts. I hope you get some relief very soon 🌸
Hello Melissa, I am really sorry to hear what you are going through. I understand as I too, have so many health problems (at the last count 29 of them). The pain I am in from my back feels more than I can bear and I had the doctor ring me yesterday to tell me that the results of an X-ray I had a week ago shows that I now have advanced stage osteoarthritis in my spine and rib cage. I can only stand for a few minutes and can't walk more than a few yards. I also have R.A, PsA, fibromyalgia, Sjorgrens and gout as well as many other problems. The R.A. over the years has caused a minor heart problem and caused me to go completely deaf in one ear. I have to rely on my husband to do everything for me including dressing and undressing me and I get so down with it at times. My doctor said yesterday that all I can do is to manage it with pain killers, yet they hardly touch the pain. I am on the usual Mtx, prednisolone, hydroxy etc.
Last month I had two nasty falls, one of them caused me to rupture two tendons in my right shoulder and I now can't lift my arm up. The second fall caused me to rupture two tendons in my left shoulder and as I went down, I also banged my head on a shelf. Because of the damage to my arms, I now can't use my mobility scooter because I can't operate the controls. I feel totally cut off as I can't go out on my own anymore. I do worry about the future.
I like going onto Facebook and keeping in touch with people and my friends often ask me how things are going with my health so I write about it on there. Last weekend, someone on my friends list, wrote me a very unkind and cruel private message which started off with the words; Will you ever stop whinging about your health problems. She went on to say that she knew two people with cancer and that was a real illness and mine was nothing. I was so upset about it. I know cancer is terrible but so is this and there are other terrible illnesses out there too, such as MND and Parkinsons etc. To belittle what I am going through seemed so unkind and I keep thinking about it and getting upset again.
I am so sorry that this has turned out to be a long list of my own problems and I apologise for that Melissa, as I started off meaning to sympathise with you over your problems. I am sorry I can't help you more, but I wanted to let you know that I understand and so do others on here. I hope you find something that can help you and that you start sleeping better at nights.
How terribly sad for you when you were trying to reach out to people that you had classified as friends. I hope you have now done a cleanse and ridded yourself of such undesirable and uncaring people. You deserve to be listened to but you need to reach out to the people who understand and are prepared to travel your journey with You, good and bad.
You will always encounter people in your life that give you inspiration and also exhasberhation. But each person is individual and what they may endure may be completely different to what you endure. Nonetheless, neither is less or more important as each other. We should all show each other compassion, even when this is hard. Please gain strength in your own belief and you will be able to move forward even though it might be slow. Even when you are low, try to imagine your goal, even the smallest step toward it is am achievement.
Thank you so much for you kind words Loura. They mean a lot to me. If only people knew the damaged that hard and unkind words can do. The saying that "sticks and stones can break your bones but words can never hurt you", is so completely wrong and words do hurt and they hurt a lot and remain with you for a long time.
However, there are good people out there and I do have some nice friends and lots of people have written to say how disgusted they are with the unkind person and of course I have unfriended her now. The problem is that I often go to a meeting where she goes and she always has to be the centre of attention, laughing very loudly and looking all around to see who is looking at her. Other people seem to think she is so much fun but I don't think I will be going to any more of the meetings there.
Once again thank you for your words of encouragement. x
You sound like you have been through a lot too. I feel for you as a kind word and some support from FRIENDS you think we would just expect.
I’ve found I’ve lost a number of friends since being diagnosed with all my auto immune diseases. Yet ive never complained or asked for anything from them. What upsets me more was when they needed support with their children with disabilities I was straight there , physically and mentally for support. Also other friends with their issues with family and sickness.
As soon as I became ill the phone calls stopped , the support stopped. So like you, you find out who your true friends and loved ones are. My husband just said it’s because I’m of no use to them as I can’t look after there children anymore as I was having organ issues and mobile issues. I think he was right.
You certainly didn’t deserve a so called friend like that , she should be ashamed of herself. I’ve slways prided myself on being there for people whether they are there for me or not . I just do it out of kindness. The idea that someone would complain to you about something they haven’t even been through and have no idea how your coping , it should of been a message to say if you need a friend just to talk to I will be there for you , shall we get together for a cup of coffee etc
You're welcome. You need to believe in yourself. If you can see her fakeness, then others will also see. Be strong and hold your head up high lovely lady because you have done no wrong. You ask of nothing other than for people to understand your invisible battle. Those that matter will support you and that is all that matters. This person is tiny against your army of supporters.
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