I saw my rheumatolgist today, she's scheduled a urgent MRI scan, really worried about my headaches and vision problems. Glad something is getting Done! Also turns out my idiot doctors at my local gp have royaly screwed me for 3 months by ignoring the adalat tablets my rheumy gave me and giving me a different type Called adalat la, that's Why I'm purple again! So she's upped my dose and told me to Tell them to do their job and follow her recommendation since She is my primary source of care my APS blood results came back negative this time so they are doing another since they were positive in december. Taken me off the morphine and tramadol and upped my ibruprofen to 800mg and the packets in The supermarket says you can't take more than 400 pffft obviously not
Hi Loubielou....this was my nickname all through childhood, and famiy still call me Looby.....
I've also had an MRI recently, because of "prickly" headaches all over my scalp and vision problems. The Consultant thought perhaps this is a reaction to being on Plaquinel (Hydroxychloroquine) for quite a while (i.e. over two years now). I'm reluctant to go off it however, because it is great at keeping the swelling and pain in my joints to a manageable level. It's been 3 weeks now, and I still haven't had the result of the MRI - so I guess it is nothing life threatening...... Tramadol does ease the pain, but it does come back.
Do your headaches really lay you out? I'm unable to even lift my head for an hour or so (it's usually when I wake up after a deep sleep) and they are often accompanied by vertigo, but no nausea.
800 mg of Ibupfrofen is all right, so long as you space them out and have them with food, to protest your stomach lining. Because children can reach them on Supermarket shelves, I think the retailers play "safe" with their maximum doseage advice.
My headaches are unbareable they make me feel sick all the time and they Never go away, the concern has come from me complaining this was happening before the autoimmune stuff was found. I went to the opticians and She said I'm slightly long sighted but the glasses didn't work. I'm just Glad they are listening to me, She even gave me 8 weeks supply of meds so I don't need to see my idiot gp. The ibruprofen arnt making a dent tbh, the fever and headaches won't go away xxx
Brufen can taken with CoCodomal (u need 2 double check the strength ratio though, I believe it's 400mg of brufen with 2 CoCo) which can sometimes work 4 taking the edge off lupus heads. Tiger balm is another good 1 2 try, plus it's a bonus that it's a balm & not ,ore pills! Worth a try honey x
I'm on 800mg per tablet and with me being on stomach protectors its prob a bad idea to take anything else tbf. Where can I get the balm? XXx
u can usually pick it up in cheapy shops like 'Poundland' etc if u're lucky. Otherwise, u can get it from Superdrug, Boots, places like that. Sometimes it's more effective than anything else. Try 2 learn & recognise the TYPES of headaches (this is really helpful in working out with pain meds r more likely 2 work) eg, if it's 'sinus' like, brufen will usually work better than anything else, if it's 'tension' like, drinking water & using Tiger Balm may very well sort it.
Also, remember caffeine can play a big part, u can get headaches from too much or too little caffeine & can sometimes sort it by having a strong coffee or cutting it out x
I probably drink way too much tea lol but I always drink water, Never have fizzy pop either. I'll have a look Thank you darling xxx
I too suffer with headaches and find lying down with a cold pack wrapped in a towel to be the most effective thing for easing the initial pain while waiting for the meds to kick in. If I take medication and then do this for 20 mins/half an hour I find that the combination helps me to feel a little more human lol... x
Tiger balm in my local Lloyds chemist. Also - I guess your ibuprofen is on prescription now, but if not - try and calculate the price per pill.
I found the co-op was way cheaper than the chemist (Boots was the most expensive!) - even though you can buy massive packets in the chemist. It's a pain only being able to buy small amounts - but you can just get it every time you go and ask friends to get it for you.
1. It sounds like you need to go to a different GP - that's supposed to be easier now than it used to be (unless you live in a rural practice like me where we just have a choice of two...).
2. Look at your diet (as well as gradually getting the combination of meds right) - certain foods/drinks can trigger headaches - nothing to do with the SLE. I've had to cut down on chocolate and cheese, sugar and anything spicy or acidic.
3. Like SHER says - try to recognise the different types of headaches: tension feels like a tight band around the skull, sometimes muscle spasms. Sinus - is pain around the eye sockets, cheeks and forehead. High blood pressure is a throbbing pain with a rise in temperature. There are other ones, but these are the main ones. Plaquinel too, can have the side effect of painful "prickly scalp" kind of headaches - with visual disturbance. I'm currently being investigated for this, and may have to go onto another drug. Something I've found very effective (it's worth a try...) is a silicone pad, available at most chemists, which can be chilled or heated in the microvave. For me, the chilled one works best with headaches (wrapped in a thin cloth) and placed at the base of my skull behind my neck for about 30-40 mins. Could be worth investing in new pillows too - make sure you are really comfortable when asleep or just lying down. Learn some effective relaxation techniques.
4. Your fiance could do with de-stressing about this. Looking at the Lupus UK video might just allay some of his fears. Lupus is a wide ranging syndrome, and in MOST cases, can be controlled, and Consultants are becoming more aware of how to help ease the symptoms.
Two years ago, I was walking around with a couple of walking sticks and my husband was also very concerned. The fact that he stays calm, and is helpful with household tasks which tire me (like shopping, gardening, bedmaking, etc) makes such a difference.
Now - I can walk up to a mile without any walking aid at all, the pain in my joints is minimal, and we have both joined a choir, and go out to the theatre/cinema at least once a week. You both need to make the most of the days when you feel relatively pain-free. The "fun-factor" is incredibly important - as much for your partner as for you.
Occasionally, I do have days when I'm very fatigued (sometimes in low in mood) and unable to tackle much - so I just go with it, and rest. LIke the others have said - you listen to your body (read the "Spoons" theory) and prepare for any important days by resting before them and boosting your energy with protein and carbohydrate foods.
5. Avoid looking online for info on Lupus - you will be tempted to focus on the "worst case scenario" and be bombarded by negative facts. You will learn so much by sticking with this friendly site (as I have done). You can be honest, and no-one will be judgemental or think of you as a "baby face" . Some Doctors DO talk "down" to patients - not always to young female ones, and it can be helpful to take your partner with you - as he can ask questions which are troubling him.
I really hope this is some help in you coming to terms with your changed lifestyle.....
Hi guys Sorry for the late reply iv had no credit. Thanks for the messages il definitely try Some changes xxx
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my APS blood results came back negative this time so they are doing another since they were positive in december. Taken me off the morphine and tramadol and upped my ibruprofen to 800mg 
and the packets in The supermarket says you can't take more than 400 pffft obviously not 
x
xxx
blood tests 
What more can I do?
Turning myself more and more inwards and feeling invisible.
Wrinkly fingers
Spf cream 50 or 50+ 
