Flare??

I need advise!! I think I am in a flare, I have got flu like symptoms, no energy, sleeping when I can, joints on my hand are sore n swollen, dry eyes, so I went to the doctor today and explained only a bit of what I was goin threw she cut me of and said I should wait a few more weeks if im stil feeling like this to go back! I said to her it was affecting my work as im taking days of she didnt seem intrested! Does anyone else get this sort of reaction I just feel like im fighting a battle on my own. What can be done when ur in a flare?

12 Replies

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  • Hi do you have a rheumatologist nurse helpline can phone leave message, they deal with flares.advice I'm currently feeling same as you but due my infection risk (lie lymphocytes) nurse can not give me anything. I'd see how goes few weeks if suffering being off work is to long. I'm sure others will reply.

    I work from home unable go out to work.

  • Hi! Im diagnosed 4 years now & I wasnt sure what other lupuies meant when they said in a 'flare'. I thought that meant you were hospilised to control it like i was when first diagnosed. Ive since learned flares are when you have a big difference in your lupus symp. Like you say really swollen achy joints or a rash, severe fatigue, sore all over, chest pain, palpatations etc. Im in the midst of a flare at the mo i seen my rheummy 3 wks ago & had lupus blood work done. I was having bad palpatations & severe chest pain all the time! Had heart monitor which showed irregular heart beat! Great just another thing i need :( Rheummy contacted me to say bloods show flare & she needs to see me again in 2 wks! Ive also app wiv cardiologist nxt wk. Ive had loads of flares since diagnosis but rheummy didnt catch them as they settled by time i seen her just by taking loads of rest (in bed every night at 8 pm) You should ask your gp to do blood work as your inflammation markers should increase if flaring. Also gp should ask rheummy to review you asap! As my blood count was normal its my lupus bloods showed somethin wrong - only rheummy can do these! Thats what happens if im feeling unwell. Your gp dosent sound very supportive. If your still feeling awful despite loads rest & pain relief go back & ask for early referral to rheummy also contact the hosp you attend & ask for rheummy nurse helpline. Ive learned you need to shout & scream to be heard otherwise you just slip through the net. Look after yourself only you know how your feeling 😊

  • I would contact the nurses in your local rheumatology department. IMHO leaving it a few weeks sounds a bit too haphazard.

  • I think the first thing you need is a different GP. My GP said that us Lupies are a rarety so they don't get much practice in fact I'm the only one at our surgery. Thankfully he has researched Lupus and learned along with me :)

  • You should seek a second opinion. My consultant is very dismissive also and I Can't stand it. I was having dry eyes scratchy , light sensitivity and headaches. Ended up seeing an eye specialist - seem the lupus is attacking the endocrine system -

    With proper treatment this can be controlled.

    All my consultant did was laugh and say it was a side effect from the Plaquinel.

    I am thinking of going private for second opinion on my care of my lupus, as am in Flare and consultant in her notes stated in was not in flare.

    So always question theses doctors!

  • I had same from my GP...no real help or support, he just wanted to give me anti depressants. I was off work so much and feeling literally like death. Not being able to walk, sleeping all the time etc. I was in tears one day and he just got up and opened the door to signal me to go. I never see him now and go to other GPs in the practice. In truth I hardly ever go unless it is desperate. And although I ring the rheumy nurses I find they can't really offer good solutions as they have no power to alter meds etc and rheumy appointments are so far apart now....I often feel very isolated by Lupus and I think that is the same for many of us. It's little understood. I ended going down the retirement through ill health route, am 58, which was also a stressful process.

  • How long have you had these symptoms? Do you remember having done "too much" in the days prior to these symptoms? Or did you go in the sun? Sometimes the body recovers itself through rest and hydration, which is why your gp has probably said to wait and see.

    If the symptoms are manageable, I'd give it few days of rest and see. If after that the symptoms are still present, ask the GP for a short course of steroids, perhaps. If , however, the symptoms are significant now, then go back to the gp and say you need the meds now.

  • Hi Irishgirl

    I have witnessed all of the above. I used to wait until I had a list of symptoms to save his time in surgery. THAT was the wrong thing to do. Got snippy. Went in with requests for ulcer treatment etc. seems I am only allowed 2 symptoms per visit now I get the meds etc but interest waned. When I was first diagnosed ( myself) his reaction as " but that is very rare!" So, I can't have it then? Diagnosis correct!

    It seems to me that we must cost too much in meds so any excuse to send us away. Would they treat heart patients this way, pregnancy?

    Since I was diagnosed I have bloods done every four weeks and that is only way I know I'm in remission. It is isolating, this condition, but come here for advice or just read, then I don't feel too bad.

    I once wrote my GP a strong letter oulining my problem and requesting re referral to rheumy. That may work as they have it in writing. Another short cut I found was to ring consultants secretary, that worked too.

    There should be easy access to the clinic and nurses in rheumy department. Get yourself an appointment there or see if there is a help line advertised.

    I feel for you. all these GPs and consultants seem to know little. You must keep trying. As someone else said, it's only the sqeaky gate that gets oiled.

    Take care Irishgirl. Thinking of you

  • Hello. I've haven't been diagnosis with lupus yet, right now I've been told I only have UCTD and I'm in the process of having a biopsy on my kidneys. Anyhow the reason I share this info is just to give you a lil insight about me. I've been having many symptoms for years however I just change all my doctors because I felt like no one was really listening to me. I finally found a great team. For I'm had issues with breathing and pain and blood in all my urine test. So what I'm trying to say is that you shouldn't settle for any doctor which you feel isn't listening to you. Is your health and you must take charge of it. I learned the hard way. So if your doctor isn't making you feel comfortable then change to a different one. Hope all turns out well for you. Take charge.

  • Hi Irishgirl, and everyone on this thread. ...I don't generally go to the doctors anymore for my flares...I just take my meds and ride it out...Most my flares dont last real long, but I did have one that lasted almost 6 weeks once.It was awful.I am in the USA, and still don't have health insurance. ..So I only see a GP now.When I got my DX in around 2001-2003..??, my insurance provider dropped me..I had previously been seeing a Rheumy periodically who helped alot....My Gp here basically brushes me off because when I first started seeing him in about 2005, I told him and brought my records with DX, and I stated I didnt want any tests ran by him, as I didn't really need repeat tests..I think he feels since he didn't DX me, I am really not his problem...

    The problem with our flares is the fatigue and pain...I can't really work out of the house anymore.People that dont have this illness don't understand. I had to take a part-time computer job...It can be depressing, isolating and people have a tendency to diminish or devalue how we feel.I hope you feel better, and that everyone here realizes they are not alone...I just joined recently, and found this site very informative.

    When we get flares, usually something triggers them..Stress, menstrual cycle, getting a cold, or drastic change in weather even..Then you feel like you have the flu, only times 3,4, or 5x worse..Rashes pop out..Joints can swell..Reddness....fatigue...Hair might come out...People with worse Lupus then I have may get kidney issues...Since I don't have health insurance, I only take steroids when needed..And pain meds/blood press meds daily...I cant take plaquenil because it didn't agree with me and aggravated my psoriatic arthritis.It is a ride for us all, hang in there.xx

  • I have had the pretty much the same symptoms and it was a flare. I might insist on seeing a nurse practitioner in the same office. I also might call once or twice a day the entire time she said to wait. When I had the symptoms, I did not know what to do and carried on. Within days, I found my thinking gone weird and I got lost driving. That was the first time I was hospitalized for the SLE.

    The medical community states on paper that the patient is an = part of the equation but In my experience the greater majority act as yours did.

  • Hi irishgirl13,

    I'm sorry to hear that you are struggling at the moment and it is affecting your work. I would echo the advice of the other members of the community here and suggest that perhaps you try and find a different GP who is more willing to listen to your concerns. Are you currently also under the care of a rheumatologist? Are you on any treatment at the moment?

    Some of the main ways of dealing with a flare are resting, avoiding stressful situations and exposure to sunlight. If you need more information about lupus I would be happy to send you one of our free info packs? Just send me a private message or email paul@lupusuk.org.uk with your name and address and I'll pop one in the post for you.

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