Disability: Hi all i have some questions. I was... - LUPUS UK


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1TeiaMarie profile image

Hi all i have some questions. I was told I have lupus sle april of this year an I'm now taking synthesis 75mg 1 × a day,seroquel 25mg 1× a day, prilosec 40 mg 1× a week, vitamin d 5000 iu 2× a day, meloxicam 7.5 2× a day, wellbutrin 150 mg 2× a day,soma 350 mg 2× a day, extra strength Tylenol w tabs every 4 hr, plaquenil 200mg 2× a day,advil 200mg every 6 hr, women's health multivitamin 1× a day,soma biotin 1000 mg 4× a day,soma omega 3 epa300/dha200 1× a day,Xanax 0.5 1 tab up to 4 × a day, proair HFA 90mcg inhaler 2 puffs as needed, and just started with shots in my hip the other day. An I still have really bad brain fog (some times can't think or put words together) it takes me for ever to do easy things like wash dishes or house work all my joints are killing me with may be a 10 min window a day where I dont feel like im dying. Can't go out like i used to I give out of breath easy feel like I have the flue. Is lupus sle supposed to feel this way? And if so does it get worse? I'm wondering cause with all this going on with my health shouldn't I be able to get disability? I mean I can't even go to the store just to get 1 or 2 things an it feels like the Sun is killing me. Anyone with any help? Or know any thing about this or has appiled and got it ?

10 Replies

Hi Teiamarie

Sorry to read your suffering despite all the medication your taking!. You do describe a flare, can you increase a dose of anything to help you thru it?.

It's always worth trying to claim disability benefits to help you but I would advise you go to either your local Citizens Advice Bureau or Dial as they will help you fill in the forms. They have to be done in a certain way to maximise chance of success. It's what I did and I got DLA having previously been turned down!. The CAB will first look at your circumstances and see what other help you could also be entitled to. I hope you improve soon. X

1TeiaMarie profile image
1TeiaMarie in reply to misty14

Thank you so much for your reply. I will be seeing my rumy the 17th an will talk to him about everything an start getting the paper work I need.some people told me I would get it an some said no because I'm only 33. I dont thank people should look at the age look at the problem an pain.

Ruby12345 profile image
Ruby12345 in reply to 1TeiaMarie

I don't know told you that. Age is irrelevant, children can get DLA. Look at the descriptors it's worth applying.


Sorry to hear you are in agony. I too sometime feel like I'm dying and get annoyed at not being able to do simple tasks. At the moment the joint in my feet and wrist are aching and I hope things will improve over the weekend. Sometimes this disease feels like a dreadful curse, but chin up, it could be worse. Try to get as much rest as possible

Hi hun,

I'm so sorry u are going thru all these flare ups Nd I have lupus sle as well Nd I'm a pharmacy technician... I think one of ur reasons u feel like ur brain is foggy is because u are on too many anti depression drugs... Such as xanax 0.5 4x daily, wellbutrin 2 x daily, Nd zoloft... I think if ur doctor cut u back on some of those daily u may not feel brain fog.. But as of the pain I take percocet Nd plaquenil Nd ibuprofen for inflammation.. I pray things get better for u... It took my doctor 3years to figure out I had lupus... After I had 5 T.I.A's( mini strokes) Nd stuffing through so much pain.. I will keep you in my prayers ☺

1TeiaMarie profile image
1TeiaMarie in reply to Nadieboo1

Thank you so much for your prayers. I thought the lupus made my mind fog. I have been on the antidepressants for well over a year and never was like this..none of the meds make me tired or anything. Everything I was reading on line was saying brain fog because of the lupus. I just didn't know about the disability cause I'm 33 an this bad. My health had been going down hill for the past 5 years then my dad passed last year all of a sudden an my joint an body pain got way worse like him passing woke the lupus up or something. I can't stand longer than 5 min without really bad pain can't sit for more than 10 min with out bad pain can't walk at all with out pain. Feels like I have the flue and a chest cold with a slight fever, an this is every day all day. Thanks so much for every thing.

Nadieboo1 profile image
Nadieboo1 in reply to 1TeiaMarie

I truly understand ur frustration... Im sorry to hear about ur father.. The stress of ur dad passing brought the Lupus out to light... like I mentioned I had 5 T.I.A''s at the age of 25 ND the doctors couldn't figure out what was going on with me... When I was 30 I became pregnant ND didn't even know it...so I had a miscarriage... had to have a DNC ND that's when the doctors found I had lupus...im with you I have pain everyday all day as well... it's sad to say my but now I've became use to the pain and is able to work a part time job at a pharmacy. . Jus hang in there

Hello, I don't recognise most of your medication (doesn't surprise me as we all seem to take a different cocktail of drugs) although i can relate to how you are feeling, it's a pain in the bum.... The problem with lupus is it effects people in different ways, so is therefor hard to quantify. It comes and goes for me, the less I do In a day th better. Somedays, I can't leave the house, others I can be relatively normal. I currently work full time, which can be a struggle, I am proud of every shift I do and being honest and open with my employer has helped me. I have stage 4 nephritis among other with a couple of other lupus Related illnesses. I have recently been successful in my application for PIP payments... I honestly wasn't holding out much hope... I took some picture (as I was typically bright as a button at my appointment) and I was just honest..... It worked for me and I was actually impressed with the whole process... I guess a lot depends on the human you get allocated from ATOS. Mine was awesome!!! Good luck with everything. I do a little blog on YouTube ... JasonLupusJourney, you may be able to relate to some of the feelings. all the best... Jason

Hi Jason, thanks for the reply... I looked you up on youtube it does help seeing other people on there that have the same problems.

Maybe you are like me, Sero negative SLE after 6 years of Sero negative RA. A few years later they told me I have another overlapping connective tissue disease. I hate it for you. It's not an easy life. My ANA always comes back "speckled" I have chosen to just ignore the labwork. Sometimes my sed rate will be high when I feel like the "Cruds" have hit. Sometimes, I am stiff like "Ironman" sed rate bottomed out. I have a wonderful family physician and Rheumy. Sometimes I feel like maybe I need a good psych dr. My physicians treat me, not my lab results.

I do have most of my arthritis (inflamed joints) on the right side of my body. I have been on Enbreal for over 5 years. However I had my left lung collapse in 2013. My thorasic surgeon told me to lose the MTX and the Enbreal. I have about 8 months supply in the fridge, should anyone need any.

Prednisone is really my lifeline. It is the only medication that I can see a good effect. It does have it's drawbacks, I lost over half my stomach due to ulcers. On the upside. . when my liver failed, they jump started it with. . . you guessed it Prednisone.

I take it one day at the time, one battle at the time. If you can manage to deal with this awful disorder like that, you will be fine.

As for disability payments. I received mine 3/27/1987, I was very young at the time, but like now I have a lot of stuff wrong with me.

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