It's not a question; it's a statement - I Can't C... - LUPUS UK

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It's not a question; it's a statement - I Can't Cope!


The fatigue levels have increased. I'm sleeping my life away. I'm constantly advised to diet and exercise, but this increases the fatigue and feelings of weakness. Recently, I've been getting certain symptoms which could be possible early indications of heart problems. But i'm terrified of doctors, more specifically needles. I ran out of the last blood test I was supposed to have and despite the terrible way I'm feeling at the moment, I'm too scared to go see my GP. I stopped taking blood pressure meds because of the side effects and suspect the way I'm feeling is to do with HBP. There have been times recently when I was convinced that my heart was beating so fast it would just stop. But the fear of doctors and needles is enough to make me prefer to face death. I don't know what to do and I don't feel like I can cope anymore.

17 Replies

Hi there, is you doctor user friendly? Have they been ok with you? If so you need to go urgently to see them or phone the nurse attached to the rheumatology clinic at your hospital and explain how you see. Please take five minutes to sit down and and work out who you trust most out of friend and relatives to come to appointment with you. Call in that favour, we all need this at times. I would also write down your history to date in bullet points including all current symptoms, you need help, even if the starting point is another doctor from the practice. The rheumatology clinic needs to reassess you. Also along with a lot of people with autoimmune disease they should also check out your thryoid function as that can creep up on people. All the best Mary F x

Many thanks, Mary, for taking the time to reply. I've got an appointment at Hammersmith hospital next week, so I'm probably going to sit it out till then. You know what GP's surgeries are like; they allow 10 minutes of their time maximum and only speak to you to ask the questions that they have on their computers, ticking off whichever you answer yes or no to; no real conversation, no consideration that symptoms aren't always as black and white as the computer suggests; just answer "yes or no". My consultant does talk to me. Makes eye contact too! Most of my friends or relatives are working or don't drive and the only time I have ever asked a friend to accompany me, she refused point blank; she's no longer a friend, I might add.

Some people with LUpus, including my daughter are doing very well on Plaquenil... it is slow to work but does help with fatigue! Mary F x

Thanks for that. I'm wary of taking any medications, as the side effects have already destroyed me, but I'll look into it.

MaryF in reply to LynnHall

It works very well for many with Lupus, it did not suit me, but my daughter is doing very well on it! Mary F x

LynnHall in reply to MaryF

Can I ask you if you have experienced any hair loss as a side effect of plaquenil? I've read that this can be a s/e. I've lost a lot of hair through chemo and it has really left me depressed.

MaryF in reply to LynnHall

No, none lost, and I am sure others on here can give answers on that, sorry you feel bad! Mary F x

LynnHall in reply to MaryF

Ok; thanks for that feedback :)

Their is a cream that some blood testing places have, it is a local anaesthetic, might be worth phoning the place where you have your blood tested and explain and ask if it is possible to have something like that

Good luck, trying to think what it's called brain out of order this am. Will try and get it into gear later

Good luck


If you have a real fear of needles, have you looked at the websites or a US one? Lots of helpful information on both of them and suggested treatments. The first one is run by Smith & Nephew. If your GP does not listen, try hunting around for a new one by asking friends and neighbours who is the best in your area. Word of mouth is much better than NHS listings. There are lots of BP treatments of all types and one can be found which will suit you, sometimes it is just trial and error, and that is probably easier than finding a new GP! Anxiety and fear as you know can make your heart race even if you feel you are not really anxious at the time, but you really must go and have it all checked out by a good GP as soon as. Try tackling one problem at a time, you may then find that the other things will start to become easier. You will also find that you may get some control back in your life even though you may feel you have none at the moment. You CAN indeed cope,so please do not think otherwise. Think the term used is tackling it in "bite sized chunks" one bit at a time. Best of luck and take care.

Plaquinil helps with hairloss and fatigue among other things. Active lupus causes hairliss. If you can tolerate one drug make it this one. Good luck. You can do this. I think we can all empathise with you right now xx

Daisy, Riverbird and Sarah: Many thanks to all of you for the feedback. I'll certainly look into all the advice/ websites and take it from there. xxx

I used to have the "magic cream" prescribed when I was in hospital for 6 months, but the problem was that they couldn't forecast where they would take blood from because my veins collapse and they end up piercing me all over. This is why my phobia has grown worse over the years. Hypnotherapy has worked, but my husband, who is a hypno-guy can't keep taking time off work to accompany me. I've got one week before my next appt and i'm beginning to freak out as of now!

Co-Enzyme Q10 (60mg/day) helps keep my fatigue at bay. I usually take 60mg/day - but up it to 100mg when on special offer. I buy most of my supplements online (Higher Nature currently best price ..and no unpleasant fillers according to Patrick Holford ..nutritional specialist). As I'm over-sensitive to most chemicals, I've had to find and learn about alternatives to be able to cope with most symptoms. Hope you get some help with your needle phobia soon ..must be so hard to cope with - feel for you. A friend of mine got help from a hypnotherapist to be able to have dental work done. Good luck. xxx :)

I had been taking Q10 for about 2 1/2 months and didn't notice any difference. Maybe I should try a higher dose for longer? Hypnotherapy helped me with root canal dental work. Thanks, Nightjar.

HI ask your GP for xylocaine its a spray and its great i have a portacath in my chest to have bloods taken twice a week without i could not keep going through the pain as i have one inch needleds put straight into it,every time i need blood or IV heparin thats what i use , it numbs the area for about 15mins if you need longer you just put more on.

Good Luck

LynnHall in reply to rlupus

Sounds awful. Thanks, rlupus. :)

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