Every time i see someone i feel like they r looking at me as if im putting it on. no one has ever sat down and told me face to face what lupus is, What to expect, what flares are etc.. I went to my asthma review and it turned into an 'excess weight' lecture, (I was always slim until these health problems) in which im quite pee'd off about. she tried to sign me into a slimming world prog. which is excellent but at present im completely dependent on my hubbie. he helps dress me etc and she is wanting me to go to a gym etc. When i tried to explain , she couldnt understand that my balance is terrible, some days i cant stand on my own etc. does anyone else feel like this.
im so sorry for my rant but i feel like im constantly in a flare and im shouting for help and no one hears me.
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wearmyshoes4awhile
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Hi I can understand where youa re coming from I remember sitting outside the hospital after seeing a rheumie and crying, we know our bodies and I knew something was very wrong with me. my GP at the time very helpfully told me it was the menopause!!!!
Not long after that I was diagnosed with fibro but still knew that wasn`t the only thing wrong after endless blood tests, scans skin biopsy and changing GP and rheumie 4 years later they diagnosed SLE but that wasn`t the end I was in a terrible flare which ended up with my GP and rheumie having a bit of a barny at which my Gp got so fed up he reffered me to St Thomas` there I get the treatment and care I need, I live in the Poole area so have to travel up once a year now by train but that journey is worth it, my local rheumie is better now so after 6 years of fighting I feel I am being looked after properly , I would suggest you take a list of your medications with you to all appointments, and list questions you need answered, and sit there until you get them answered always take someone with you who knows you and your limitations well, hope this helps a bit, ((((((((hugs))))))))
Hello, how familiar the last two articles sound, I am so weary of trying to convey just how SLE can cause so many symptoms that seem so obscure to others. I am exhausted this morning having been unable to sleep due to very painful muscles in my legs, stabbing pains in my toes, but thankfully in the past hour they have subsided a little. Every day is different!!! Will try to cheer up and treat myself out to Sunday lunch. Best wishes to all.
how contrary doctors are some have an agenda all of their own. now i want to join a slimming club and go to the gym and they wont pay for it. just basically say they cant. its like if i did not want it they would force the issue .....
my gp sid she did not believe my diagnosis. the next time i went to see her in full flare she was not so flippant. i suppose they are just people first doctors second
Doctors have neither the time nor the inclination to educate us about our diseases. That's just the state of managed care. It is our job to be proactive and do the learning. The doctor cannot tell you what to expect with flares because lupus varies so widely from patient to patient.
Exercise does make a difference, but sometimes we can barely take care of our activities of daily living. Realize that the person who told you to exercise is clueless. When we have the flu, our bodies make inflammatory cytokines which is what makes us feel "fluish." When you have lupus, your body makes inflammatory cytokines just because it can. I explain that lupus is like having the worst flu you can imagine, so bad that your hair hurts, except that it does not just stay for a week, it stays for weeks and months, and more.
i just thought i had read a paragraph about myself!! i too am experiencing utter rudeness and lack of care from my sle specialist. i see her every six months (although due to appts being cancelled by the hospital its now been nine months since my last check up!) and she talks over me and tells me to "toughen up". i was given a pamplet about lupus when i was first diagnosed by her and told to look up symtoms and that was it!!
im glad ive found this site as i dont feel so alone with the many many odd symtoms lupus gives us that can change daily! i really thought "am i going mad?"
i am currently begging my gp to see a new rhuemy but ive been told no so far as she ment to be the BEST i can get
i have read alot of members questions and have learnt alot about herbal (non drug for want of a better term) pills etc i can take that might help me and im so desparate to ease the daily fatigue ive lived with since 2005 i will try anything.
i do feel for you and wish you luck, fight to see someone else please. take care x
youtube.com/watch?v=Txx2jZy... This gives u a rough idea of what lupus is. Some GP's (even Rheumatologists) r SO ignorants 2 how each individual suffers with lupus. I'm currently rowing with my rheumy as 2 the affects lupus/APS has on my mental health, despite my retired Consultant/GP AND neurologist telling him that all the neurological problems I am having r caused by lupus & APS, he won't have any of it & just says it's depression lol! Lupus is not a 'Text Book' illness & the sooner people realise this the better. U know u're body better than any1 else so don't be fobbed off & take everything they say as 'The word'. U know how u feel and don't allow ANY!, no matter who they r or how highly qualified they r 2 tell u otherwise. Good luck x
Hi Sher78 we are in a bad place at the moment. My son is 19 and has been in hospital for 3 weeks.
He became unwell 6 months ago with myocarditis and then pericarditis which became chronic. He has gone from a young man (with aches in his limbs, shoulder blades, hands and feet that he put up with) going out and having fun and going to uni. Now he is depressed (don't blame him).
He had abdominal pains for 3 days and the Gp thought it might be appendicitis he went to hospital and they took his appendix out. (normal apparently even though the surgeon said the blood vessels looked inflamed). Then after his op his heart rate was above 150 and his bp was really high and his oxygen was really low. He then starts having a fit. He goes to ICU and fits there too. He was even unresponsive to pain and had a Glasgow Coma Scale of 5 which apparently is bad.
He is under a Rheumy who we are lucky has been supportive. Josh has normal bloods so she cant say he def has Lupus but we know it is. THe dr he is under in rehab now is an arse. We have had to fight to get MRI brain and spine because we are worried he might have vasculitis and if it goes undiagnosed could see him dead.
They said they didn't want to do another MRI of his head because one was done in August but that was pre all these seizures. He has Ataxia for the 2nd time and this time is worse than when he was in in August. He has been admitted to hospital 5 times now.
He was unresponsive for 5 hours and because he opened his eyes once the nurses decided he was faking even though he didn't respond to pain. They didn't even get him reviewed. Dr's and some nurses are so judgemental I could throttle them. Josh was even asked how his home life is as they are thinking he doesn't want to come home. Thye think he is putting things on just to stay in hospital. What world are they in???. Josh also has 2-3 nose bleeds a day and mouth ulcers. He has to walk with a frame and they think he is loving it.
Emma, I really feel 4 u're son (& obviously u'reself of course). It must b so difficult watching u're son go thru all this & not being able 2 do a thing about it, plus the fact that the Docs seem 2 b dragging their heels. I'm sure u're son really wants 2 b tottering along with a walking frame & spending all that time in hospital. Bloody joke. I know it's probably of very little comfort but most of us went through similar experiences whilst being diagnosed with specialist, Docs, whoever not believing us. I myself was told it was all in my head at 1 stage & despite having been diagnosed 4 over 18 years now, I STILL (as do many of us) get people & medical professionals etc think I'm exaggerating or putting things on (yes, cos I REALLY want people shoving things up every possible hole I possess & enjoy spending hours in various hospital departments!). The thing is, u have 2 fight 4 him, he probably doesn't have the will at the moment. At the end of the day, the nurses, docs r there 2 provide a service & it sounds as if they aren't. Maybe speak 2 his rheumy & discuss u're concerns? U need 2 b firm & demand action, it doesn't make u awkward, if u're not satisfied u've gotta just keep going on & on at them, if u make enough noise, some1 will listen eventually. I wish u loads of luck in getting some answers x
Hi there WMSFAW....... you will find empathy, information, and some useful support on this Blog Site...... I have learnt far more on here than with ANY health professional I've talked with over the past 3 years. (Like you, I seem to have a combination of SLE/Fibromyalgia, plus Spondylosis of the neck and spine.)
A couple of things which may help you...... the "falling over" might be something called positional vertigo (certain meds can cause this). Some months ago, I was the same, and couldn't even get to the loo without either crawling, or with my husband supporting my weight. My GP prescribed Betahistine Dyhydrochloride (8mg) x 2 , and these did clear it up after about 3-4 weeks.
Other non-drugs I've found to be really effective (as advised by friends on here) are: Turmeric capsules, and flax seed oil capsules. Both these help with the constant fatigue and lifting us out of the "doldrums"..... I still haven't managed to solve the "body clock" thing, though. ...
Hence, I am still on the PC at almost 5.a.m. with no sleep, other than 4-5 hours last night. Sometimes I catch some sleep in the daytime, but it is never for very long. My Rheumy insists that the insomnia is the primary cause of the Fibromyalgia symptoms.....
As other folks have suggested....we do need to be assertive in obtaining help, or even refusing when we know that treatment is not working or making symptoms worse. (I finished up in A & E after 3 months on Methotextrate, for example). Just this last week, I've agreed with my GP to reduce the dose of Plaquinel, because it has been causing the "hot needles in the head" sensation (see other posts about this!). Since cutting down to 50% (just 200mg/day now) over the past week, I no longer feel as though my hair is being frazzled!
This is all too familiar. I have found that you have to work the system to get anywhere. Faced with a new medic, I insist on giving the poor sod the full saga.
But ultimately you do need to have the right consultant on side to make you life work. Get refered to a specialist and make sure you see them. If need be right to you consultant with you particular concerns, most of them will get on the case.
This is such a familiar story. Ive had such a hard time with my rhuemy, he left me suffering for 5 years. I know see Prof D'Cruz at St Thomas' who is just amazing, but I only see him twice a year, the rest of the time I have to deal with the incompetence of other Drs.
I so agree about everything that's being said here. I've written a letter of complaint to my rheumaotology department 3 times this year, but never sent it because I just don't have the mental or physical strength to see it through. Also because I don't want to alienate myself from my local hospital, as I can't physically travel to see a specialist that isn't near by.
As a health professional myself (very part time now) I totally understand the pressures our doctors are under, but lupus patients are very vulnerable & there must be a better way of managing our illness in the clinical situation.
Sometimes I can't string a sentence together, let alone begin to describe to a rheumatologist how lupus is effecting me. I've tried printing out lists of symptoms to give to them, but they wave them away, & insist on writing their own notes. Which often turn out to be wrong when I get a copy of my GP's report. All in all a very stressful situation, for an illness made worse by stress!
How about getting some leaflets from Lupus UK, warm shoes? Have them ready next time you go to any kind of appointment. Or better still, send one to the asthma review nurse. It sounds like she missed out on the auto-immune lectures!
Gotta agree with u there roobarb (I myself worked in the health sector until a sever flare caused me 2 give up work 18 months ago), the docs ARE under pressure but somewhere along the way, the job satisfaction is not there 4 a lot of hospital staff now, the majority of nurses I worked with didn't give a toss about the patients & many Doc's just saw it as a 'chore' if a patient came in 4 something other than a regular check up or review. The NHS is certainly not what it was (when I studied nursing in '95 I didn't expect my job role 2 b more like a glorified secretary rather than being hands on with the patients, but that was the dreaded 'Project 2000' 4 u) but I still have faith in our health system, there r some fantastic staff there who know their stuff but it's finding them & getting them 2 treat us
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Seriously I am half an inch from giving up. If you're reading this PLEASE reply. I am at a loss.
