the battle never ends........

[caninecrazy]

hello luppy buddies,

im having a moan as im exhausted from fighting for help. I usually see my rhuemmy every 6 months, sometimes this changes to a 9 month apt gap due to the hospital changing dates but now its January 14 so that will be a 11 month wait!?

ive had the most awful summer, my flare began shortly after a chest infection in feb this year, march was the beginning of day and night sweats; my body will "heat up" from within within a second and the sweat will pour like a tap, my clothes were soaked through (sorry) its humiliating to say the least as even standing in a shady breezy spot outside it doesn't ease? yet my skin is warm/cool to touch.

visual headaches, shaking, nausea, legs stumble, fat fingers,depression, brain fog...... to name a few I still had to live with. two apts with GP were fruitless as were told to wait to see my rhuemmy as they didn't know enough about lupus to help me (written their names on my calendar so I never see them again) the hospital has a new apt system where you no longer know when your next apt is,they post it to you 6 wks before. whereas it used to be given by receptionist after you had seen your rhuemmy.

anyway, I finally managed to get a contact number from GP surgery to contact my lupus nurse, all she said is they are extremely busy and as I had managed this flare alone and had started to feel better theres no need to bring apt forward!! well, I cried and cried. 7 months of hell ive been through and no one gives a monkeys!

I don't know who to turn to to, the only GP in my surgery who knew about lupus has now retired and we have now merged with 4 other surgeries so there are always new GP's who I don't know, ive asked the receptionist who is best for lupus care but never can get an apt with him.

I cannot go through another summer like this again, ive barely kept my job, all overtime has been taken away as im unreliable. im struggling to keep bills paid and now its another winter without heating again, great when I have raynaulds. really cant take much more.

all I get told is " its lupus, adapt and live with every new symptom"

feeling so down, depression is hard to live with. ive truely had enough of lupus and the ignorant people who judge me as "i look so well".......yeah rite cause my hair is tied back in just a way so to hide the thin patches and my foundation hides my purple blotches and im writing list after list as i cant remember a thing!!!! GRRRRRRR

a sad caninecrazy x

[jayfer]

hi, I've just had my eye apt put back 3 months. They were going to test for sjogrens at the appt. My GP advised me to go to PALS to ask them to get me an earlier 1. It may seem nothing to the hospital to change appointments, but to us stress, which we don't need. I rang PALS on Thursday who said they would look into it. Have you PALS there to speak to?

[Hidden]

Hi there, don't know if this will help as you have spoke to rheumy nurse but I have had this scenario many times. What I do is ring the hospital and ask to speak to rhuemys secretary. It has worked on more than one occasion. The worst hospital for me was st Thomas's London. 2years would pass of rescheduled appts. If this is your hospital then don't waste a phone call. My local hospital( I was under 2 hospital s), we're helpful. I had a letter early this year from st Thomas telling me my rheumy is now working at my local one. An appt was sent to me which was put back after a short time. I rang the secretary and did not hold back on my feelings. I said" I had this nonsense in London. I am not going to tolerate it here. If my rheumy is going to mess me about then I'd rather stick with the local rheumy. At least he is consistent." You have to stick your neck out sometimes. I'm not normally a pushy person, but I have learnt to out of necessity. Nobody else will help you. With this disease you have to fight to be heard all the way. Make a nuisance of yourself and good luck with it.

[JJKANE]

You sound how I feel .... I am bed bound now most of the time , lupus has stripped of who I was and a empty painful sleepy shell

[joannebond360]

Bless you caninecrazy. This sounds like a nightmare and all too familiar. It's awful how we are left to suffer.i have had to deal with gps and hospitals like this until I moved area, gps and now under addenbrookes hospital. Where a outs do you live? Know my consultant sees people from all over.

Hugs to you.

What medication are you on?

Jo x

[misty14]

What a nightmare for you, being I'll is enough. I'm lucky with my Rheumy in that I ring the Hospital when my appt is due and they say it will be delayed but I can make one if I'm ill and go on as cancellation list. Could you try this?.Hope you can sort something out.x

[Lesley-chard]

Hi I had that too and decided to change hospitals. I moved to st Thomas and never looked back. You need to have some faith in those treating you and so worth moving to get it.

[Purpletop]

I'm with 6161 on this one - push, push and push some more, otherwise someone pushier takes your appointments. Go camp outside the consultation room if necessary, just do not take 'no' for an answer! It isn't nice but it is far better than suffering!

[Slowmo]

Hiya, I really feel for you and relate to the symptoms you've described. I saw one of the consultants in my team on Friday, and informed him of many of the symptoms you describe - my concern is that he immediately put me onto 30mg pred and also changed my immuno suppressant drug due to similar symptoms - you are entitled to care without delay!!!

If I were you, I'd make another appt to see your GP and insist they contact your consultant to seek advice before the next appt, tell them you cannot wait any longer, that you will not make it through the festive season without a review and that your career is at risk (GP's would rather keep people in work if they can).

In my GP's practice only one of the team of 8 have rheumatology specialisms and it's often difficult for me to get to see him, but the other GP's do not hesitate to contact the hospital as they are aware of their own limitations in knowledge of lupus and seek advice over the phone (usually getting a reply same day), they've found that the rheumy would rather a 3 min chat and offer advice re meds etc, and if necessary have brough appt's forward.

All the best, I know it's a battle but please don't give up, you deserve to be looked after.

[seekingfreedom]

I agree with all of these comments. Im so sorry you are having a rough time. About to post myself - because I HAVE just changed hospital and care, got onto the treatmnet I need and just feel so relieved that I can finally get taken seriously.

Please dont give up, and put up with your situation. When I rang Lupus UK in desperation they gave me a name of an alternative consultant in a different hospital. I havent looked back. Good luck x

[Elfie1]

Hi there, i'msorry ur having a bad time, i get the (u look well) all the time, I think u should get in touch with Pals. they r usually based at the hospital.don't put up with any of this, r u actually receiving treatment? Hope u get sorted soon x

[watercolour]

I am so sorry about this - I too have had a massive fight for the last two years! I hate the "You look well" comment... all so devastating. Keep fighting until you get the care you so need. I feel for you in this. Why does it have to be like this? I so wonder where it is going with these doctors? Don't ever give up... Take care X

[dgleds]

Yes Im one that looks ok, when Im not ok too...

Sad thing is being pushy is stress...and stress not good for lupus...

I had a ton of stress today, and I was out and about....got the runs...so embarrassed (some meds do that to me)

[capecutter]

I THINK IT IS A DISGRACE WHEN PEOPLE HAVE A DIBILITATING DISEASE LIKE LUPUS .THE MEDICAL SYSTEM OF TODAY IS NOT COMPASSIONNATE TOWARDS PEOPLE WITH A LIFE LONG OF PAIN, ITS AWFUL!! THEY DON'T UNDERSTAND BECAUSE THEY DON'T HAVE IT. THEY NEED TO BE COMPASSIONATE !! I THOUGHT THATS WHY THEY WENT IN TO THAT FIELD, ITS NOT LIKE THAT ANYMORE, BUT IT SHOULD WHAT A SHAME TO TREAT PEOPLE IN THAT KIND OF PAIN I WAS TESTED POSITIVE FOR LUPUS AND IT JUST HAS DESTROYED MY LIFE I JUST DON'T KNOW WHAT TO DO ANYMORE . THANK GOD FOR THIS BLOG

[madmagz]

Hi, I really feel for you and can sympathise as I had a really rough time for a few years until I got the direct number to the lupus nurse at the hospital clinic that I go to. She is a God send and I can phone her leave a message if she is busy and she will phone back as soon as she has time, maybe you should find out if your rheumy clinic has this service as it certainly sounds like you could do with it. Since I have been using this service my life has been full and active as she helps me get from one appointment to the next and if she feels an appointment needs bringing forward can arrange that. I would suggest that you find out if your clinic has this as I know that many clinics for all sorts of illnesses do run theses services now.

Good luck and I sincerely hope you get the help you need

Madmagz x

[bluebell99]

If you are having a worse time than usual, your GP can ring to make an appointment for you at an emergency rheumatology clinic, I think most large hospitals have them. Mine has done this for me and although it isn't just lupus patients who are seen, the rheumatologists can still help.

Even better these days when previous appointments are all on computer and they don't have to wait for notes to be physically there to find blood test results, etc.

I have never gone the secretary route for an emergency appointment but I guess it will only cost you the price of a call to find out.

Good Luck.

[bedfordlodgers1]

I am so sorry you are feeling so bad. I can totally sympathize with your symptoms, it is the most difficult illness to deal with. The problems seem to go on and on and it can make you very depressed. I think people are unaware of lupus and do not really understand rheumatoid problems. I often think I should hire a wheel chair get a stick, perhaps or better still put a poster across my forehead saying I feel so ill today I don<t want to talk about anything. once the diagnosis is made you are on your own, and never miss an appointment by mistake you could wait forever for another one. I only did it once but I burst into tears because I was counting the days to see someone and the disappointment was overwhelming. Why I don,t know because the last time I went I had only just removed my coat when the visit was over for another six months. This time I Iimpt in to the room and told him I I could barely walk because of the pain in my ankle, he actually sent me for an xray but said he would let me know what the result was in 6 months time!!!. I have read all the replies from others and found them really helpful. Keep going and make a fuss, we all get the you look so well and it is so upsetting.I am usually a really cheery person but you sound just like me when I,m down, don,t give up there is help out there just shout louder. Take Care.

[caninecrazy]

hello everyone,

a BIG heartfelt thankyou to everybody who replied to me, it means so much to know im not alone fighting this crappy illness. im taking your advice and plan to see someone at PALS as ive been feeling like rubbish for 8 years and enough is enough,my spirit cannot take another battering. i AM a human not just a NHS number.

you have all given me the support i needed to begin a new fight,a fight for my life as i am worth something.

i honestly dont know what i would do without this site and you guys xx