It's been a while ... Bit of a roller coaster but I'm well and truly "on the up"!
I've started to feel better (massive reduction of all symptoms apart from the fatigue). Seen rheumatologist at Manchester Royal (👌👍) who diagnosed "probable sjogrens and other undifferentiated connective tissue disorder". Prescribed hydroxychloroquine which I'm hoping will eventually have a positive effect on my remaining fatigue.
Im just negotiating a return to work (phased) but I'm most worried about the driving - I find it exhausting and am therefore unsafe for anything more than 20 min drive. Anyone else suffer the same? Any tips? It's likely to be the deal breaker with work longer term if I can't drive.
Lots of love everyone and thanks for getting me through some very dark days xxx
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Polly2Cats
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Hi Polly. That has been happening to me from time to time. I take iron if I am yawning in the middle of the day or really sleepy. I was getting scared to drive. I think its connected to anemia. The iron perks me up. Plus drinking (water) keeps you awake. They say sleepiness could be connected to dehydration. Stay hydrated.
Thanks Natura I'll try the iron - I've usually got commendable iron levels according to my GP but I'll try anything. I drink loads and always carry drinks and sip in the car (tho admittedly it's often coffee in the car which prob won't help hydrate). I also keep an emergency stash of those gels used by the weirdos who exercise 😉 For energy n hydration.
Please discuss any iron supplements with your doctor before starting them. If you do not suffer from anaemia caused by iron deficiency, they will most likely advise you not to take them because iron can be inflammatory, which can exacerbate symptoms of lupus if you have excess levels.
Not that it is the best advice, but I use mass quantities of diet cola. (I avoid aspartame, since it gives me migraines.) I had to move about a year and a half ago, and it was just so beyond me that I took Ritalin. I also have been using prednisone when I had to or wanted to function on a trip. If you are young your rheumatologist might not want to go there, but if it is function or perish, you might be able to take if for a time until the plaquenil is really working for you. You can talk to your doctor to see if he/she has ideas. If not there is always caffeine.
Thanks I'm seeing my GP today but I'm pretty sure she's going to tell me to stick with the meds I've got - she doesn't seem keen to support me getting back to work if I'm honest (because of the environment in which I work). Caffeine it is!
I manage a 1 hour motorway commute - I am able to flex my start time if I'm struggling to get up in the morning eg 9-5 or 10-6 which helps, plus allowing bit longer for journey and knowing where I can stop for coffee if need be along the route.
The flex start time is a good idea. I live in a rural area so it's a one hour drive with no opportunity for pit stops but I guess a flask would suffice. I do have a blanket (originally for snow but now for emergency naps!)
you've got great replies from natura & ann, so there's little I can add...except to say I've been managing this prob for a long time....various other chronic health issues complicate my version of this (EDS & spondylosis) so the right combined therapy daily lupus meds aren't the only solution to my version of this. But conscientious lifestyle management + my meds do help a lot! I'm afraid, though, that I vvv seldom drive further than 15-30 minutes away because I find driving so hard on me. My hospital drives take an hour each way, do I save myself for them
Hi ,!I've found using drive wear glasses has helped me and a easier car to drive, I live a 2 hour drive from Glasgow, so hospital/ shopping trips were getting me to I had to split it with friend and share it. My Eyes feel less gritty using them and think helps energy wise, plus I do live on buckets of coffee too!!. I've been on hydroxy 15 months now.. Also I've had 2 doses of kenalog in last the year too, one at Xmas and one in April, I think that's that's helping too. I've been told I can have that 2 - 3 times a year.. Finding it wears off at 3-4 months so see how last now, next consultant appoint October and Im moving house this week, which will add a 20 min commute each way daily.., Im only a mile away at mo!! so time will tell !!
Best of luck with the move and new commute! I will try my glasses instead of lenses ...
I've had kenalog once and it may be I'm doing well now because of its effects but I've been advised not to have it again as it made me almost psychotic and suicidal. Pretty awful experience tbh!
I guess the trick for me is also to keep eyes preserved for the drive home in the dark on A roads - I hadn't considered that aspect!!
Please, everybody here who has discussed ways of getting round fatigue to drive - if you do not feel safe to drive distances, then please don't do so. If the fatigue is so bad - think what it will be like after a day at work? My daughters are both healthy but I know they struggle driving home after a 12 hour shift as nurse and paramedic. If you are so tired, if your vision is not all it should be, then you are a risk to others on the roads. It could be your mum, brother, child who suffers from the potential accident.
Taking iron is not an answer to the fatigue of autoimmune disease - it is a component of the illness. Plus taking too much when you don't need it also has risks associated with it.
Mine was/is connected to sleep apnea... I find chewing gum helps me to stay more alert... of course it then affects my TMJ, but one must not cause a crash for falling asleep when driving. Can your job be performed from home?
I would like to point out PMRpro 's advice and urge you not to drive any longer than you feel safe doing so. Are your employers aware of your diagnosis? Are they able to make any adjustments, such as allowing you to work from home sometimes? If you would like more information for yourself or your employers, we have two guides which you can view and download here - lupusuk.org.uk/working-with... - If you need physical copies of the booklets, please just send me a private message or email paul@lupusuk.org.uk
Thanks everyone I do take my driving responsibilities extremely seriously - I know all too well what it's like to lose a sibling in a road accident caused by a drunk driver and driving whilst tired or under the influence of drugs (whether prescription or otherwise) is a no-no. I'm also pretty paranoid about making sure my vision is corrected adequately.
I've already shared the leaflet Paul and I know that although they are supportive now the pressure will be applied very soon to move from a 20 min to one hour drive which is way beyond my wildest expectations!! From my employers perspective they need me where the work is so the alternative would be dismissal which I'm fine with - life's too short and precious to be under that kind of pressure and risk.
Sorry if this sounds defensive but I kind of assumed it went without saying!
It's a bit moot as I don't even have a car and am just gearing up (boom boom) for a four hour round trip train journey to my GP.
My eyes start to feel unfocused, almost like they have a 'quiver' going on, can usually manage 1-11/2 hours drive tho some depends how the insomnia is going lol x distance sunglasses have helped a little x been started on folic acid as very low on last blood test! Also completely missed last period!!
I have a driving window of maybe 35 minutes tops. Unfortunately my son's school is over an hour away and if I have to pick him up via an emergency...yikes I have a 'emergency fatigue' kit in my car; bottled water, a can of mixed nuts (the protein helps my concentration), a blanket and pillow in the back if I have to pull over and have a sleep.
I will have to echo what others have said however that, if you don't feel safe enough to drive, then please don't. Yes, I know, returning to work feels like a victory and I'm sure you really want to give it a try (and I also know, contrary to some advice above, many jobs don't have a work from home option), but it's not just yourself at risk, but other people as well. I've had quite a few near misses on the road myself, and I now refuse to drive to my son's school unless I'm having a very good day - if in doubt I call my ex-husband and he arranges for someone to pick my son up, or if my boyfriend is around he drives for me as he's on my insurance. Please don't force yourself to do something unsafe. Go slowly, give the medication time to work, and if that means giving work a miss until you settle in, it might be best.
Please be careful. I was very run down just before Christmas and nearly nodded off at the wheel. It was a reality check to me. Can you use public transport or get lifts? Should you even be going back to work if a drive is enough to exhaust you? I hope you feel better soon and know how frustrating it is when all you want is to get back to some sort of normality. Good luck but think carefully about the driving - for your sake and other road users.
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I have a 'emergency fatigue' kit in my car; bottled water, a can of mixed nuts (the protein helps my concentration), a blanket and pillow in the back if I have to pull over and have a sleep.
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