Have just come on to have a bit of a rant really as I am thoroughly fed up!! I still have no diagnosis, the last time I saw the consultant he said its probs just 'post viral syndrome'. Offered me no advice other than to 'pace it'. I actually am a very positive person and my friends have always said that I don't look ill because I keep smiling through it all.
However, right at this moment I just feel like I'm onto a losing battle. I live on my own, have had very little social life this year because of all of this. I'm due to go on holiday to Ibiza in less than two weeks and my friends keep saying how excited they are etc. I just feel confused because I'm looking forward to relaxing with my friends but deep down I know I'll be in pain, not feeling 100% and I'm absolutely dreading the travelling there and back. Does anyone else feel like this? Like in your head you want to be around people because you feel so bored etc, but because you feel physically sick / in pain you tend to avoid people? This is where I'm at at the moment.
Even in terms of work, I was managing a few hours each day, but then over the last week I haven't been in because I'm sick of the constant struggle of trying to get enough energy, getting to work, feeling so sick I have to sit in the toilets for 30 mins. It sounds like small things but it all just feels a battle.
And I feel like nobody in the medical profession is listening. My consultant said in July to treat it as post viral syndrome, but that he'll see me again in October but if anything happened before then to email through.
Well the nausea thing has been affecting me but also last week I had such severe foot pain that I couldn't walk, I emailed them last weds, and I've had nothing back. Not even an acknowledgement.
Anyway, if anyone has any advice / tips to make me snap out of this that would be good, or if anyone would like to join in my rant!!!!
Lots of love
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natal1a
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It must be awful to be young and ill. At least those of us who are older can opt out if we like. Maybe your GP could give you something for the nausea as your consultant hasn't responded to your email.
I'm not sure what you can do about your foot pain. I've had foot pain for years and have seen a podiatrist. I have insoles which help a bit, but my feet still hurt a lot.
All i can suggest when you do go on holiday with friends, is to make sure you get plenty of rest, even if it means not being able to do everything with them. I'm sure they will understand as they know you are ill. Take care.x
Hi there ,I really do feel for you,my daughter is 27,has 3 year old twins,works fulltime,long hours,I hate to see her like she is,but she has no choice but to work as she is the main earner.
She is at the moment being treated for systemic lupus,loads of tablets a day,most have helped a great deal.she had been unwell since she was a small child,but I was always told, "WELL SHE LOOKS OK TODAY", idiots!At the moment the consultants she sees(neuro,dermatolisist,renal consultant,heart specialist) have decided she probably doesn't have lupus after all
She has been told,ME,MS, lupus, MS & Discoid Lupus,now maybe Lupus and Vasculitis.
Please go on holiday,do the best u can to enjoy yourself,Email your consultant again until you get a reply,go to tour doctors and tell him you want to try something else for the pain.
Don't put up with it,that's what my daughter did in the end,she ended up with scarring on her heart valves,scarring on her kidneys,swelling on her brain and spinal cord.
It is your body,if the people you see won't help,change doctors,change consultants.
My daughter has just asked for s secound opinion to another hospital,then all of a sudden her reasn't brain/spinal mri shows something it didn't before,a board of rare disease people have asked to see if they can crack her case,my daughter no longer gets over happy about things,but hopefully someone will work it out for her.
I hope you go and prayer people,believe me,if you don't you will get know where fast.
Remember look forward to your holiday,I wish it was me going.
Thank you Melinda, so kind of you to reply. I think I am just getting frustrated and even when people mean well it gets to me. Like when people ask if you're feeling better today. I know people are only being kind in asking but I just feel like screaming 'NO I don't feel better'!
I have some over the counter medications for nausea, and they do help a bit. But if it isn't that then it is something else, pain in my ear and neck that I've had for ages, and the pain in my feet. It is worse in my right foot, to the point where sometimes I cannot walk on it at all and sometimes I can just about manage with painkillers.
I just feel a bit down that life is passing me by and I feel like it is out of my control. I live on my own in a small but nice enough flat, and day to day I don't really see anyone, and this is just not me. Last year I was always on holiday, travelling the world, off on little weekend breaks all the time.
I know there are worse things in the world and trust me certain people keep reminding me of this, but I cannot help how I feel.
The office where I work is closing down in May next year, so I will lose my job or get transferred to another one. Due to me struggling to work full time I have decided if I am offered a redundancy package that I will seriously consider it. It will not be a long term solution and I 100% want to carry on doing some kind of work. If anything I really want to help others in these situations, particularly young people in helping them to find out what they CAN do rather than what they cannot do. I haven't really thought about the specifics of all of this but all I know is I want my life back and then I want to use this horrific experience to help other people.
Can I ask what your foot pain feels like? Mine is like a constant ache, the sort of pain you get when you have been walking around for ages and ages. But I now get this even with my feet up resting. When I walk on my right foot it almost feels like a shooting pain going up the back of my foot. Is this common in lupus? (not that I have been diagnosed with lupus officially yet).
Been having stomach problems so have decided to try a gluten free diet, again just by myself as nobody seems to be offering any better advice. Really not sure I should be doing this though?!?!?! Think I may be losing the plot a bit haha...
Hi there,sorry I meant to say,pester people not prayer,flippen mobile phones,ha ha,and yes ,my spelling is BAD!
Have you tried a heat pad,wrap it round your foot,argos do them I think,about 20 pounds,plug in electric ,helps me four a while,I use it on my ankle,knee,hips,my daughter sleeps with for neck pain.
Also i would go and get sickness tablets from the doctor,as I said before,if your doc can't help you,then they are no good for you.
What sort of stomach problems do you get? I used to get a lot of pain and bloating before I was wheat free, and recently I've gone completely gluten free. I've also noticed that sugar can have a similar effect on my stomach (pain/wind/bloating) so i'm mostly sugar free (there are lots of sugar alternatives these days so you can still eat chocolate and cake!). I now don't have the stomach problems unless I eat something with gluten or sugar in. Do message me if you want any advice about this. I'm no expert but I have lots of personal experience.
Massive sympathy for you.xxxxxxxxxxxxxxx Hope it helps to "offload" to your friends on here....... it doesn't matter if it is Lupus or not (the symptoms are similar and we are all suffering to a greater or lesser extent!)
It sounds an obvious thing...but have you been to a Chiropodist? (It may pay you to have a one-off private consultation, rather than wait forever for an NHS one.....). They may have a better idea what the problem might be and point you in a positive direction to find some relief. I had to give up my job in Pharmacy because of severe pain in my feet - turned out to be cartilage "spurs" inside my heel - caused by wearing backless sandals (like Scholls) and flip-flops. I was referred to Orthopaedic - and they made me some inserts for my shoes and I haven't worn backless shoes since. It took over a year, but now I have no pain there at all.
About your tum.....many of us have problems here too, and have to be careful what we eat. If you haven't had problems with eating: biscuits, bread, cereals before, chances are you are not allergic to gluten (it is in SO many everyday products). It may just be that your stomach lining has become sensitive. This can be helped enormously by a natural product (available through any good health shop) - PROBIOTIC ACIDOPHILUS - best taken half an hour before you eat, or first thing in the morning before any other medications. It has no interactive effect with other meds. I also have to take LANSOPRAZOLE twice a day, as I have a hiatus hernia, and it neutralises the stomach acid.
Try to avoid acidic foods/drink (citrus),spicy and fatty foods, and rich dairy (cream, full fat cheese). Rice is very good for sensitive digestive systems.
Enjoy you holiday - especially the sleep-ins(!) Remember to pack the Factor 50 and buy a big sun-hat....!
I love your idea about being there for other young people / have you tried applying at your local FE college?
Thank you too Sandy. I am sorry to hear about your daughter. It has also recently made me think how stressful and upsetting it is not only for the patient but for their families too. I know that my parents are worried about me being in my flat on my own etc and I try to keep them reassured but without pretending everything is ok.
Thank you for all of the practical advice. I really do want to go on holiday. Your daughter sounds amazing for being a mom and still working full time too. I feel bad for not being at work full time at the moment but I am also trying not to be too hard on myself. This is all fairly new to me, I don't feel that there is enough support for people from the consultants or that they take into account the mental effects these illnesses have, and also, I am not receiving any treatment, even with painkillers I asked a question and got a wishy washy response from the doctor. I don't like to criticise the doctors, I know it isnt their fault that there are so many cuts etc being made. So all in all I am playing a bit of a guessing game at the moment.
The consultant said he will see me again in October and will then start me on hydroxychloroquine if I am no better. But I don't see why I have to wait that long. I also thought I had probles with my kidneys, blood and protein in urine, but my kidney ultrasound was supposedly normal, although like you have experienced, there seems to be such a difference in test results depending on which hospital / lab you go to. Weird.
I really hope your daughter is ok and has the support she needs x
Ah bless you,what a lot of rubbish you are having to deal with,please don't put up with your pain,my other daughter is 21 and has a spine condition,she has had many injections which haven't helped,many pain meds,now she is on morphine and is due back at the pain clinic next week.
If you have to deal with pain to long,in turn it can cause depression,my daughter has to take tablets for that also,but if she didn't I don't know hiw she would cope.
There are a lot of pain meds your g.p can try you on,but you may have. to keep pestering them until you get some relief,can I just say the plaquil,definatley helped my daughter massively,maybe your doctor could send you to physio for your foot pain,
Do you have anyone who can go to the doctors with you,just to give you a bit of support,I recently went with my 21 year old daughter to the neurologist,I made a bit of a fuss and she agreed my daughter needs to see a back specialist,she had never seen one in the 3 years she has had spine pain,if I wasn't there I feel my daughter would have been donned of.
I really do hope you get sorted,and enjoy tour holiday,if ever you need someone to chat/rant,feel free to pm me.
So sorry to hear you are feeling so ill and unsupported. In my experience it takes ages to get a diagnosis and it is frustratingly slow, I felt very unsupported through the process - I wish I'd found this site at that time as the support here is fantastic.
I would tell your friends exactly what is going on for you in practical terms ("I'm not very well and awaiting diagnosis so I'll need a bit of rest time each day, but don't worry about me, I'll join in where I can..") and you may be pleasantly surprised how supportive they are. I agree the nausea could be treated by the GP which would help things. I've just been away on holiday in Cornwall and it did me the world of good, and so long as I got enough rest time I surprised myself with how much I was able to do (I even went body-boarding!!).
Have you noticed whether you feel worse after being out in the sun? I would be aware of this as a possibility if you have Lupus, and be sensible (wear suncream/wear a hat).
Thanks Looby, I feel so happy to have had some fun!! It certainly lifted my spirits and I feel like I can cope with everything so much better now. Thanks! xx
Thank you all, you are ALL so sweet on here. The nurse at the hospital has just by coincidence replied to my email she has passed it onto the consultant so hopefully something may happen soon.
Dryad, I have sent you a message about my stomach issues. Hope you dont mind. I actually seem to have no reaction in the sun. No rashes or anything like that. But I am normally quite careful in the sun anyway. I really love the sun so was hoping I wouldnt become intolerant of it.
natal 1a. I have been on a gluten free diet for a few years, mainly because of IBS, and it helps keep my weight down. There are so many gluten free foods in supermarkets today so it makes a gluten free diet easy, although i will avoid GF cakes and bisquits. More and more restaurants today cater for a gluten free diet. I didn't ask the doctor as i eat a healthy diet and they weren't interested in my IBS.
I am not sure whats causing my foot pain. It feels like it affects the nerves of my feet and some of my toes. The podiatrist says i have inflammation at the base of my feet. Hot and cold compresses seem to relieve it. I myself would like my feet to be x-rayed to see whats going on, after all, you can't get far without your feet.
I don't know whether you've been to Ibiza before, but we went there a few years ago after i was diagnosed with lupus, and it was one of the nicest holidays we had. It is a beautiful island and there is more to it than the party scene. I found it quite uplifting. You seem to have a positive attitude and i do hope you enjoy your holiday. x
Hi, I'm pleased you got a response from the nurse. I had to wait 4 months before going on th placquenil and then it started to 'kick in' after a few weeks (3/4) and I swear this is a life saver and I hope this will get your life back on track. I do think it is important to not isolate yourself whilst at the same time try to achieve some 'balance' in your life by pacing yourself too. I too am awaiting a definite diagnosis although I now feel that this will occur soon and I think a lot of people on this site have unfortunately had to endure a long wait until they are diagnosed. I hope you get some positive help very soon xx
C'mon natal 1a how can we cheer you up. Unfortunately any illness with aches, pain, fatigue and nausea can make you feel depressed + the stress of not knowing what is actually wrong with you doesn't help. Viral infections can sometimes take months to get over. Has this illness started since you came back from India, have they done stool specimens to rule out any infectious diseases e.g. parasites. Do you have an Infectious Diseases Unit in Birmingham whom you could ring for advice. You could ask your GP to check your immunological tests and also take a urine specimen and they can test immediately for blood and protein. I notice in your earlier replies you have had some good days and even managed some aerobics, perhaps because you are a positive person you are pushing yourself to hard, you may need to slow down to let your body recover. Gosh I'm beginning to sound like Dr Doolittle (lol), now your feet, my husband had dreadful pain in his feet for 18mths he was reduced to tears and thought he would have to give up work he almost broke his ankle being careful how he put his feet down. Went to Doctors Orth Surgeon and had physio x 2 weekly for over a year + painkillers x 4 times daily without any relief. A friend suggested a Sports Physio, low and behold he made him a pair of insoles, the first time he wore them was like a miracle he was totally painfree, apparently he had something called Mortons Neuroma which altered the alignment of the small bones in his feet causing the pain. You have a little time before you're holiday to rest and pamper youself and I'm sure as the time draws near you will get in the mood and enjoy your holiday. I will be thinking of you.
PS I only meant to write a few lines but once I got started I couldn't stop. One more thing (a joke) hopefully it will make you smile.
When Joan Rivers was born apparently she was small and frail, her mother asked the doctor if she would survive.. The doctor replied " I think if you would take your foot off her throat she has a very good chance" ha! ha!
I've had foot pain just like yours and the physio advised me to change my footware. I now wear a full slipper instead of the slip ons and sandals with straps round my heels instead of flip flop style....feet fine after taking her advise. Good luck with everything!!
Thank you everyone for your help and advice, it is very very very much appreciated.
I really feel like I want to get out there and raise awareness of this hideous illness, because dont you all find when you say 'lupus' to someone you get a response like 'oh ive heard of that but dont really know what it is'.
I dont know what I'm going to do to raise awareness or support the cause yet, but Im definitely going to do SOMETHING!
No.1 on your "To Do" list - obtain the information pack from LUPUS UK. The DVD and booklets are very good - I've passed them on to friends and rellies (AND my GP!)
Hi, have to say reading your post is like reading my life! I am 23 and in the process of hopefully getting some kind of diagnosis. I am luckily on summer vacation from uni but am dreading going ack in a few weeks as I know how hard this year has been trying to juggle being a full time mam and getting all my assignments done.placement in a school was also very tough! I worry about the futurr and whether I will even get a job, who would want to employ me when most days I struggle to get arpund and concentrate never mind try and do a job!! It is very hard to remain positive!!
I was also told by hospital that it could be viral but I never had a viral infection. This has been going on for a year now. Ive asked my gp to ask consultant to bring my appointment forward from january to hopefully the next month or two. Hopefully he will and hopefully I might get some answers this time!
I hope you get an answer and some help soon. Message me if you want to chat xxxx
My sympathy to you too Megs.......you sound like you are doing a Ba ? I also did this (in my late 30s) and found the TP very hard, as I got so tired. How you do this AND be a fulltime Mum is amazing..... Explain all this to your tutors, and they may give you extra time for assignments and exams.
Hopefully, you will see a caring Consultant SOON - there MUST be some out there, surely?
Thank you. Yes I am doing the Ba. The placement is tough enough in itself but feeling like this just makes it a million times harder. In the 6 weeks I was there I had a bad kidney infection, swollen gums, fatigue, joint pain, backache, a cold where I lost my voice for 2 weeks and I also suffered from lots of dizzy spells. As you can imagine these kinds of symptoms do not mox well with the duties required when teaching! But some how made it through. I had considered telling ttors about the problems I have been having but feel they will tell me where to.go asI have no diagnosis and obviously look fine from the outside
Thanks again for your concern, this group is great for being able to speak to people who actually understand what your going through xxx
Re your hol & friends: have you seen 'spoon theory'? If not google it & get uour friends & family 2 read it- brill explan of how it feels 2 have a chronic illness & how 1 day ok & next crap etc - then they will understand how tough it is & will understand if u need 2 have a day in bed 2 recover from an outing/ night out etc
Never heard of the spoon theory but i am going to look it up xx
Hello
I have just come across your blog and want to say I feel your confusion the symptoms of Lupus are so diverse and devastating it's hard to know what to do with yourself at times. Try to go away with your friends but stay out of the sun wear a good sun cream all over, invest in some FitFlops these really help with the painful feet. I don't know what meds you are on but steroids can make you feel very low on many different levels so be aware of what your medications are doing for you and to you. Big Hugs stay positive.
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she has passed it onto the consultant so hopefully something may happen soon. 
Flaring and fed up
fed up and struggling to cope.
No Consultant back up now
Fed Up And Stressed...
