Hi everyone I am new to this site and have not yet been diagnosed, I have an MRI soon I hooe, I have been pushed from pillar to post for 7 months. I am in pain every day, shooting pains pretty much everywhere, and the other pains that are there all th time. The worst for me is the rib and chest pain, every bresth is painful yet I am told to wait 4 more weeks for some tests, but nit sure hiw long the wait is for MRI. I feel so along like I am complaining constantly, I feel like no one wants me around because I cause ztress and upset. My partner is lovely, we do not live , I feel very bad for him because he stresses about me being ill. I feel so terribly guilty, unable to do thr things I used to do. I still manage to go to work, but after work I am finished, again leaving me guilty for having to get straight in bed. I am very depressed and I know which road I am heading down as every breath hurts. I cant imagine over a month of this. Sorry my first post is so negative, I juat have nowhere to turn, no one seems to be listening, I feel like I am dying, and at this point my only sadness is that it is too slow. X sorry about the spelling my phone will not let me correct
Why do I feel so isolated and alone: Hi everyone I... - LUPUS UK
Why do I feel so isolated and alone
Just so you know you have been heard - you feel alone because you are, you have something wrong that your family and friends don't. That makes you different. And lonely - even with obviously a very loving partner, but he doesn't know what you are going through, he can't feel it.
I don't suppose for a moment it helps when I tell you that autoimmune disorders typically take a long time to diagnose - so you do have a lot of people who know exactly where you are coming from. There are waiting lists for the complex tests - and cancer and stroke patients always jump the queue so the queues get longer...
Is it out of the question to be signed off sick? At the moment you are expending every atom of energy you have on work - and there is nothing left over at the end for you or anyone else. That is no way to go on and maybe more rest and less stress might leave you feeling a bit more positive.
Do tell your doctor about how you feel and the depression - because feeling you wish you were dying faster is not a good place to be. They WILL understand - if they don't they are not good GPs. It is perfectly understandable - but unfortunately the system doesn't have the capacity to give everyone every test immediately and someone must wait.
Sending you some virtual hugs - and I do hope your GP is kind and helpful. Confide in your partner and take him with you to the doctor for moral support.
Thank you so much. I didn't even go into detail and yet you totally understood. I keep quiet most of the time but then hit breaking point. If I had pain killers that helped with my chest pains I think it would be easier but nothing seems to work. I will try and get signed off, its so off putting when your doctor speaks over you and doesnt listen, when I told her about my chest pains she just said " u r young your fine" thank you for your kind reply, it makes me very tearful in a good way.....
Take someone with you who knows how ill you are feeling - it really does concentrate their mind. What she probably was thinking was that you thought it was a heart problem - but to quote age as a get-out is appalling and I would tell her so. Age has nothing to do with illness.
Off you go and ask that lovely man of yours for a cuddle xxx
If you have chest pains and you can take your self off to A&E you should do so or else ring 999. Chest pains should be taken seriously no matter what your age is.
All the best and my prayers are you will be sorted soon and find some peace 🙏🙏👍xx
Thank you Maureen, I have done that on one of my bad nights, the done a ECG and found nothing, with the other symptoms they said do not leave i and go back to my GP
I would ask to see a different gp if possible are you in a group practice ? Thats a ridiculous thing for her to have said like PMRpro said age has nothing to do with it x
Hi buffy, I was told I should wait to change doctors because yhey are in the middle of trying to find out whst is wrong. There has been a catalogue of mistakes, results dissapearing ect. Very grateful to have a voice now, thank you x
Hello holly: am so glad you've posted and got these great replies....am sure there will be more
There is little I can add, except to say welcome...and please keep us posted
🍀🍀🍀🍀 coco
Welcome. Others have made excellent suggestions. This is one place you are most definitely not alone x
Thank you Lupikniks. Its very good to know
Hi holly147 it's lovely to meet you, you are so not alone I completely understand where you are coming from as do so many others on here, I know those feelings of despair because you think you're never going to feel well again and appointments and tests are so long in coming and it feels as though no Drs are really listening, I'm in the middle of it right now too.
I've only been part of this group since May and it's the best group that I've belonged to , I now actually feel like I'm in the right place for the right advice and support and it definitely makes me feel less alone and I think every post that someone writes helps so many others even if they don't reply.
PMRpro's advice is very good advice, it's hard to work when you feel so poorly, if you can take some time off now it might be better in the long run, I burnt myself out trying to work because I didn't want to be off sick or let anyone down and ended up having a year off, I didn't do myself any favours!
Keep posting and take care of yourself and let others around you take care of you too, there is some light at the end of the tunnel however small it looks from where you are standing or if you can't even see it at the moment, it is there.....that's what I keep telling myself.!
Warm Hugs
Diane 🌺Xx
Thank you so much Diane. I am off for a week at the moment but fear going back. Your words are very comforting, its shocking how many people are suffering. Again thank you and I hope you also feel better soon x
Thank holly, that's good you're having time off , don't push yourself if you're not well enough to go back, I use to feel so guilty being off sick but in hindsight it's a feeling that took up energy that I didn't have ! Putting yourself first when you're poorly is so important.
We're all here for you. 💐 Xx
Hi Holly,
Thank you for sharing your story with us. I am sorry to hear you are feeling so poorly. As you can see this forum is a very supportive place, so please don’t hesitate to post whenever you want to have a chat or if you need more information.
It’s perfectly normal for you to be worried and fed up with the length of time you are having to wait for tests and a diagnosis. Don’t hesitate to talk to your doctor again, or even change your GP if needed, as you shouldn’t feel like you are not being listened to.
Please do take on board PMRpro’s advice and talk with your doctor about your depression to see what additional support they may be able to offer.
You might find having more information about lupus useful and you can request an information pack here lupusuk.org.uk/request-info... on our website as well as have a look at various other leaflets we provide about the condition lupusuk.org.uk/publications/.
We also run several support groups all over the UK and you might find having a chat with your local group helpful and you can find details of your nearest group on our website lupusuk.org.uk/regional-gro.... We also have a leaflet about lupus and depression which gives you more information about support services that are available - lupusuk.org.uk/lupus-and-de....
Let us know how you get on.
Thank you Febienne I will have look at those sites. Bless you x
Hello febienne this is holly147 can you advise me. When I sign into my holly147 account it wil not let me reply, it says I do not have permission, am I blocked? I don't know what have said to get blocked. X please help
Hi Holly,
No, you are not blocked. I have a feeling that this may have unfortunately been due to an error with the website or perhaps you had accidentally been logged out.
Please try logging in with your original account and trying again. If you continue to have trouble, please go to support.healthunlocked.com/
thank you i have e-mailed them hopefully that will work, its a great site and helps an awful lot
Dear holly147 - You poor thing, it's awful for you but it will get better. I can't tell you how much help this website is - it saved my sanity - plus a kind GP put me on Sertraline antidepressant as I am sole carer for my husband. My friend insisted on coming with me as so many appointments left me confused and feeling like a hypochondriac. It is really common in our position. The advice you have had here is all sound and the Administrator has given you more websites for support. You will get strong again. Good luck
Thank you Cas70 you have taken the time to help me and I really appreciate that.
I have had frequent chest pains. X-ray & other tests reveal nothing. It hurts with every breath. Nothing helps for pain. Prednisone helped me. My pulmonary dr was convinced it was the envelope of the lung rubbing.
Your pain may be very different but we have all been there.
it is a lonely illness. People often can't see it so they can't understand fully. I too feel guilty. Also the financial impact is difficult. Friends & family try to understand but can't.
Think positive &'take care of yourself. When you can make sure & do things that make you feel good. Self care is so important. Meditation has helped me with the stress of this illness as have breathing meditation. Sleep is important. Remember you can't control this & just do what you can for yourself.
When you see Dr have a list of concerns. Keep it short & to the point.
Good luck & remember better days will come. Take good care.
Hon I soooo understand what u are like. I feel also that even my partner does not want to hear it so I try not to say things. Being on sites like this is so good that u can let ur rant out n we will all understand cos we r the same. I gave up work 2 years ago I had to. Sounds like ur pushing itself too hon. Even going part time may help n u can get help from housing to esa to start with Come on here as much U like and rant as u can't bottle it in. I think also finding a group so u can go talk to others face to face is good therapy. Where in the country do u live ? Also there are other sites I can give u contact to which r closed sites just for us n u learn to get to know as little or as many you like by adding people u like to ur team. But use this as a rant place if u like and just to read others helps too. Big hug from me cos I know exactly down to the feeling s at the end of ur note. But u here now n we can help
Thank you Jacclaire, its weird, you don't wish anyone to be in the same situation, yet appreciate not being alone, thank you for understanding, my mood has really lifted since being on this site and I feel more like the happy bubbly jokey me. Being happier makes a big difference t my pain, I handle it much better. Is it easier not being at work? I used to do 5 days, 9-5 but now I do not do Tuesdays. I have had this week off it has been nice to use the little energy I have, to cook proper meals, when at work I live on toast and jacket potatoes as they are quick to do. My partner really is an angel, I guess if he wasn't I wouldn't feel the guilt. The poor guy will hug me, I say nothing but would like him to stop as it hurts sometimes. Some days its lovely like it used to be. I live in south west london. How dare you call this a rant! Just kidding I love a good old rant. I am feeling alot better thank you, I think by my post that day people knew exactly how I intended to fix the situation. Its very much a roller coaster, thank you for your kindness x p.s I will try and cut down my hrs if things continue downwards, I don't think I can give up work, too much thinking time is a bad idea for someone like me x
I have found it much better to give up work although one thing I miss are the children ( 👶🏼( I used to be a nursery manager) and chatting to parents n colleges as now they have all dropped me but so have my friends as people don't understand. I like time by myself and husband n dog 🐶 so I still get out I feel better that I can have bad days n not feel like dying so much as having to work like it or not going into work then next day you try n tell people why u were off n they just look 👀 at u like u make things up lol I got a green house now n potter slowly or better in there doing what I like listening to music 🎶 or I love ❤️ audio book 📚 I'm addicted 😜 I try n do craft and it helps my hands also it got to the stage at one point ☝️ that I could not process information but have the time to practice n get my mind working again( a long way yet lol ) I find now I think my health is so much more important than work and money 💰 it's been a year and half and still got a long way to get my life to how I may like it but u prob never get that n I still get a lot of bad can move hands can't walk far at all days but then I can have them and still try n get my body a bit better by doing all my hobbies e.g. To make my hands work more. I could never do that at work n I used to live off same thing as u ( are we long lost twins 😂) but now I actually cook I have a stool in kitchen and eat better which as u know is better for you n body so yes I had my esa top pay 💰 awarded and in focus group what ever that is and was told unless things changed I don't ever have to work or re apply again I get 214 pounds 💷 a fortnight which is better than a kick up the bum lol and I can concentrate on me. I think otherwise I may b worse down the line but everyone is dif. So that's my autobiography lol hope to talk soon
Hi jac, sounds like are making the best out a bad situation. The stool thing is a great idea I didnt think of that. I have also gained weight, I was a gym bunny and in the best shape of my life and my partner is a power lifter so gaining weight also has a big impact on me but I hope to do silly chair workouts at some point. Its better than nothing. Workingout kept me on a high. Sorry I took a while to reply. My account was playing up. I think I may try do maybe three days a week because too much time to think is a bad idea, plus there is only so much Jeremy Kyle and Deal or no Deal I can take. hang on in there, the people who walked away from you surely would not be supportive and no help to you if they had stayed. It can be worse to have many around you who just do not want to listen or care, you have your hubby and your dogs to put a smile on your face x
And yes I too feel people think I am pulling a fast one when I take time off, but at this point I do not care because when I am in tears none of them are here to wipe my tears x
Why not put up a post on a new thread with the things you find difficult to do now and ask if anyone has hacks that work? I can't sit to iron - it just doesn't work for me - but I used a tall stable stool to perch on, same for cooking. One friend uses a plastic garden chair in the shower. She also has double handrails - one on each side - on all her steps. Lots are little things - but they make a massive difference when you add them all up.
Good girl not care about if u take time off or not. I know things like bills n things like cards n loans prob but ur health comes first and I know u prob heard that a thousand times but it has taken me nearly 20 years to believe it. On some of my cards I am on a reduced payment plan, not a ccj or bank rupture or nothing like that speak to cit advice best thing I ever did n u just say look I can't pay cos I ill I have ......,,,( they never ask for dr letter or any confirmation and they are just glad of something n it goes in ur favour that u are willing to pay something. They are supposed to contact u ev six months n don't but if they do just say it's not changed. Don't worry about if it takes ages replying we all know we can get struck down anytime Eg I not seen my emails for days. Wish I could find people in Swindon too to meet up with from here. It's good to talk to u though it's first time in ages I not felt so alone. Keep me posted it's nice chatting
#holly147
Hi Holly
Your not alone in feeling like you do I want to scream some days, had my family round last night for a drink and catch up with adult kids, the minute I start to talk about this dam!! Condition they change subject I can tell but is it because they don't understand it too or is it easier for them to not talk about it?
Please go to your GP and tell them how your feeling they will help if you can't face that put it in writing that's what I did next thing I knew I had a 20 minute consultation with him (not nearly enough time to discuss all symptoms lol) do not feel guilty and your never alone on here x
Thank you JVspeed, I feel a lot better now. I am one of the people who smile and laugh a lot, so if I am feeling down, I go very very low. And am very easy to upset especially now that my personality has changed. This site has helped me loads. I do think have to get anti depressants because know it will take one small thing to tip me over the edge. I am back to work Monday, so need to be ok x thank you for taking the time to talk to me. Its a strange thing when people change the subject, I also question it, is it a" not this again" thing, or maybe they are uncomfortable discussing it. As for them not understanding, I dont think anyone can unless they have been ill for months or years, I am guilty of it myself, I now know it's soul destroying, I guess thats why people like us join together and unite x
So I'm not the only one..... ur personality really has changed? I thought I was going senile or breakdown
Yes we need to x I've had this condition over 10years wrongly diagnosed only had a diagnosis in 2013 UCTD I no its lupus cos of all the symptoms but my bloods are negative for ana? Esr crp is always raised through the roof, no one knows UCTD I might as well say I got abcd lol x
Lol well I know my alphabet. 10yrs hun? That has to b tough. But you are still here 😊JVspeed, do you mind if I call you the terminator? Seriously, hats off to you x
The national health took to years to send me to St thomas London If any of your family or you czn get a loan Go to St thomas, They can do a blood test to see if you havs S.L.E.norma
Hi..am I going crazy.. I am so sore...please ...help
Help and support needed! Struggling.
I keep missing work and feel really bad.
I’m posting a lot I know but I feel so hopeless
I have a rash all over my body and don't know what to do?
