When do you know when things are serious? - LUPUS UK


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When do you know when things are serious?

gillirun1 profile image
10 Replies

I've got so used to feeling really rubbish I'm not sure I'd know if/when I'd developed more serious symptoms. Like many of you guys ilive with daily pain, fatigue, hairloss, ulcers, headaches.....the usual. Nothing so far has worked...prednisilone, hydroxychloroquine, etc. At last rheumy app I said i felt as though this disease was still making it's move over me, he agreed quite possibly. I still think this is the case. Rashes, fatigue and pain continue to worsen. As do headaches, general neuro symptoms etc. I feel like a total hypochondriac anyway. How do you know when you reach a stage when you really need to flag things up? In the last few days I have just felt inexplicably yuk. Im fearful of where I am heading.....

10 Replies
Lupoid profile image

It's a question I ask myself regularly. I guess the answer is to pace yourself and listen to your body. I've found I've gotten used to feeling a certain way and anything new that crops up I always seek advice over. I feel like a bit of a hypochondriac myself at times but rather safe than sorry and if your GP is a good one they'll understand.

Purpletop profile image

I usually write down every symptom each day, applying a rating for its seriousness on a scale of 1 (best) to 10 (worst). I also write down ( and this is important) what I don't have anymore, for example no nausea, or no breathlessness, no headache today, that kind of thing. This way I keep track of how I improve, what symptoms come and go and which one gets worse and by how much. Each week I look back and see the trend of the illness. You would be surprised to see that although you had something wrong each day, things do improve. Or if something gets worse, or new symptoms seem to develop, you'll see that also. I usually raise something with the doctor if I haven't had it before, it causes me a lot of pain or worry and it persisted for more than 4-5 days or occurred more than 4-5 times in 2 consecutive weeks, because to me that shows a worsening trend that needs flagging up. But I also take heart when I see an improvement trend across a month - the improvement trends tend to take much longer to develop, unfortunately.

It seems a bit too specific but I do it to ensure I get doctor's attention - they are, after all, scientists, they can't argue with evidence and statistics but they will find it more difficult to believe our subjective view of our illnesses ( despite the fact that we know our bodies much better than any doctor).

gillirun1 profile image

Thats really good advice. I can see that, but am not sure i can make it work.I did try and do this once before. I only managed to keep it up for a fortnight because I just found it terribly depressing. I know in overall terms the trend of my illness is down as is shown by how little I can do now compared to the past. I know the illness is not controlled and the constant appearance of new symptoms makes me feel like this thing is still marching across me. I do have a giod rheumy but dont get to see him very often. My gp isnt great....seems out of his depth, has nothing to offer and doesnt know what action to take so I am reluctant to go very often.....all a learning curve

lennox profile image

I know how you feel I been really rough for 2 weeks now and had blood tests and was told by my doctor. That my bloods was ok. So why do I feel like this. I don't want to do anything headaches. And all my joints hurt. It's ok ready from a book about the illness. But living the life is so different, I should know the past 5 years has taken a down turn for me, and I have had to learn to deal with this, and listen to my body, so rest rest rest untill it passes, you know your own body so my advice is listen to it, and when ur feeling like you don't want to do anything, DON'T stop and relax push to much and it will knock you down as I have found out, take care Kelly

Cann profile image

I, too, keep a diary and I tend to look at every symptom as being my body trying to heal itself.

Keeping positive is so important and worrying can often make things even worse for me.

The best thing is to listen to your body and if you can learn to muscle test yourself or douse it can only be a good thing.

I never know for sure what my body is trying to tell me, but I find out by testing.

Just remember the body really wants to heal itself given the right conditions and purpose to do so and often outside intervention by, let's face it, people who don't know your whole body like you do, could possibly make matters worse.

Everything affects our bodies whether on the physical, mental, emotional or spiritual level so we certainly need to get to know ourselves very well!!!

gillirun1 profile image

Thank you for all of your kind advice. It looks like keeping a symptom check will be useful in the long run, I shall try my best!

Nightjar profile image

Great advice ..keeping a diary. I do it too (on and off ..I must admit) and find it very useful. Even if it IS depressing, it does help to have things written down - particularly for docs appointments. Many lupies feel like being hypochondriacs ..but inside we do know that we are not! Lupus is not in the head! I hope you feel better soon. Thinking of you. xxx :)

roobarb profile image

Like you jillyrun, I found keeping a symptom dairy very depressing. So I did a list of symptoms instead which I have set up on my computer in a table form. When I go to the rheumy I give each one a score from 0-10 depending on its severity since my last visit. As symptoms can come & go, I score this over the whole period since my last visit rather than just what it was on that day.

I give the rhuemy the printed list & ask for it to be put in my notes, because I have found they often interpret things wrongly if we only talk about them. It's also good because they can look over the list & discuss symptoms rather than just having a random conversation & then realising afterwards I have forgotten something I wanted to say.

Keep a copy for yourself & then if you need to, you can look back & see how symptoms have changed or developed over time. Also put every little niggly thing, even if it doesn't seem to be important at the time, as it might just be the clue your rheumy needs.

I hope this helps. Very best wishes. X

scoobydoo1 profile image

gillirun1 the guys here are so spot on with their advice, my flare has been going on since last june when i collapsed and developed pericarditis, luckily I kept a diary of my condition, daily blood pressure, pulse temperature and oxygen sats so when I saw my gp he refered me to the medical team, i had a few more tests including nerve conduction and barium swallow all nil but once I looked back on all of my problems and did a time line it became so apparent i presented this information to my gp and he ordered the blood tests there and then and has on record now put my condition down to lups amazing realy as stil awaiting ana blood result, even more amazing presented same info to my medical consultant and he also agreed and has now refered me on to the rheumatology team. as roobarb says above get them to put your info in your notes and keep a copy yourself, this does 2 things 1 it shows you are on top of your condition and they cant fob you off because you have the evidence and 2 things move so quickly you forget. good luck. mark.

gillirun1 profile image

Wow, great advice Scooby and rhubarb, thank you sooo much for your time. I have to find a way of recording these things in a way I can manage

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