[FranS]

Hi there everyone,

This is only my second post, I introduced myself a couple of weeks ago. I was diagnosed with Discoid Lupus back in 1998 & recently have been having lots of rash flare ups, extreem tiredness, aches & pains, headaches, nose ulcers,

I'm taking plaquenil which tends to keep the leisions at bay but recently its not seeming to be working...in fact its been worse since my new job, delivery driver.

I've had lots of cold/flu like symptoms, tummy problems (like IBS symptoms of when you gotta go you gotta go!), feeling very down, bad period pains & other menstrual goings-on, various things that show my body is 'low' like ecsma (?spelling!), infections,

I've recently been to the Dr (quite a few times in fact!) & the last time he was sure it had gone into SLE but did a range of blood tests & nothing showed up, not even a raise inflamatory marker or if it was up it was only up slightly. The last time I went to GP I insisted on a referal to St Thomas' as local Dermatologists/Rheumotolgists (spelling??) weren't taking any notice of the aches/pains/tiredness, he's refered me (yippie!) but not received the appointment date as yet.

I'm so tired at the mo & my memory is shot to pieces. At work I've made so many mistakes the last few weeks. When I took this job (delivery driver for a company that supplies welding stuff/tools etc) I had always done office/desk jobs before so it was a lovely, stress free change. I absolutely adore this job as my stress levels have gone down a lot & my mental happyness is much better (have suffered from depression & stuff before so making sure my mental welbeing is good is a very important thing to me)....but...over the past two months I've got more & more tired which I put down to the fact its a physical job. Then I got flu/infections/mouth & nose ulcers...then the leisions started & then the pains in my arms/legs/hips etc started. Then I got migraines & on it went....

Last week I was at the end of my teather as I was in so much pain & was going to bed most evenings really early cos I was so tired. I felt like going in & handing my notice in by Friday but didn't cos I love the job so much. Today I was in tears as I knew the day would get more painful as the day went on. My partner was trying to help with various ideas but wasn't really that much help, bless him. The sun & heat in the van is making the rashes/lesions on my face much worse (I'm wearing facor 50 & have the sun visor down), a new rash has appeared on my neck (the side near the window) & my forearms get sore from the sun. The heat & the sun are making me exhausted, sometimes I have to stop & have a 10 min snooze cos I'm nodding off. Also I steadily get more achey throughout the day (& now first thing in the morning). My hands get all siezed up if I drive for a long distance from gripping the wheel as well.

Thing is I don't want to give up this job as I love it & don't want to go back to office/desk jobs (as I don't like them) but don't know what else to do.

I hate feeling like this & keep thinking I'm being lazy & imagining things.

Until I get the appt at St Thomas' my doctor won't give me anything to help as I'm not diagnosed with anything.

Suggestions would be appreciated, plus boxes of tissues as I keep on bawling as well!!!

Thanks
Fran
x

 

[sadieone]

Hi Fran,

I am sorry to hear that you are having such a hard time with your illness and how it is affecting your work. It is a wonderful thing to find a job that you like to do and even better if you can keep it.

While reading your post i felt all of what you were saying about the pain, depression , tummy problems IBS and all else that goes along with this horrid disease. I am experiencing just that right now so i can truely relate. Joint pain, back pain, IBS, forgetfullness, sleepy and weak.

You are not alone.

But i strongly suggest if at all possible that you find the time to take a few days off from work and REST.

From reading every you are saying all I want to do for you is REST.

Especially since you are a driver. The last thing you want to do is have an accident while working and driving.
You mentioned you knod off a little at work so much so u have to take a nap. The last time that happened to me i almost had a car accident on the highway.
REST,, take the time off to just sleep and let your body heal. This is the best way to get back on track with this illness. If you keep pushing yourself you may end up at the hospital with worse symptoms that keep you from working for a longer period of time than if you just stayed home for a couple of days.
Take a friday and monday off,, that way you have 4 days in a row to rest up with out taking too much time from work. Or leave early on Friday and take monday off,, that way you have only taken 1 day off from work.

Write down all of your symptoms................. I say that is the best way to inform your doctor at St. Thomas' of all you are going through.. Cuz if your like me, you will get there and FORGET everything you wanted to say.
Less stress and he/she can keep it in your file.

Also , get yourself some sun protective clothing to wear under your uniform if you can.. and top off the spf a couple of times a day if you are working outdoors or in florescent lighting alot. Here are a couple of places you might see some clothing you can wear.

http://sunblock-clothing.com/womens-spf-sun-protective-clothing/
http://www.coolibar.com/index.html?

I use spf70 everyday even when i don't leave my house i believe it is made by coppertone. I buy lots of it when it is on sale and i have it all around the house and in my car for easy access.
I have lots of windows and the slightest bit of sun and florescent light does affect my body.
I hope you are able to take heed to the advise given,, REST< REST< REST it really does help.

Take care and keep us update on your doctors visit..

 

[confused1]

I understand your frustration. Sounds to me like you need rest. Maybe a break from work altogether. I know that's hard. I've been there and now I haven't worked in several years. But your health has to come first.

Can you go back to your physician and explain what you wrote in your post? Maybe you need a change in medications or ..... I'm not up on medications and therapies like a lot of folks here on the board, but I know you sound like you need help.

Be gentle with yourself, please. Do you wear a strong sunblock every day? Face, arms and hands. And there are companies that make sun protective garments. I know you probably have to wear a uniform, but they make stocking-like gloves that cover youre hand all the way up to your elbow. it saves your arms from the sun. And a hat with a big brim.

Frankly, if I ride in a car during daylight hours for more than an hour or so, I end up with a fever the next day and lots of pain.

Please go see your doctor and ask for help managing your symptoms. And rest. It's not bad to get the rest you need.

Sunny

 

[LolaLola]

Hello Fran,
If you look on the main Lupus UK pages there is now a sun sensitivity group called Eclipse. Maybe they can advise you. They also have a list of sun protection including window shades etc. Sunglasses are a good idea too.
Thinking of you.
X Lola

 

[greenhaggis]

Hi Fran!

It does sound like you need a break - can't the GP sign you off sick!

I recently was advised by my Immunologist that antihistamine can sometimes help with sun induced rashes and swelling! He did say that it could take up to a month before a noticable difference happens!

Citirizine is what he prescribed - it is also available in UK at the chemist! If this does not work there are stronger ones available that the GP can prescribe (I now take a stonger prescription only one).

Perhaps you could ask your chemist/pharmacist for advice, or go back to the GP. The GP should be helping with some form of treatment prior to seeing Specialist - the specialist will change treatment if the choose! Are you taking Nsaids (anti-inflammatories) and painkillers, if not it does sound like you need some - please see GP and push for more help!

Good luck and take care of yourself!

Love Lesley

 

[FranS]

Many thanks for you replies ladies. Sadie - its such a relief someone saying that they have felt exactly how I'm feeling, its that feeling of not being alone anymore & knowing someone has been through it.

Sunny/Sadie - I have done a lot of thinking over the past week or so & when on Monday I realised that I just couldn't go on & it was starting to really affect me badly I decided I had to do something there & then kind of thing & take immediate action. I went into my boss (after plucking up the courage as I'm not good at confrontation) when I got in Tuesday morning, explined that my Lupus (Discoid/potential Systemic) had been awful over the past 2/3 weeks & that I needed some time off. He said he was on holiday the week after next & when would I like the time off. When I said 'before you go on holiday, in fact as soon as possilble' he looked supprised but suggested the rest of the week (Wed/Thurs & today) & then asked if I wanted more off next week!!!! So I asked for Mon & Tues as well.

I felt really ill by the end of the day & am so thankful I've taken time off cos I was at breaking point. I explained a little of how I felt & said I felt it was better to take holiday before I make myself ill & then have to take time off sick, he agreed.

So, for now, I have rested & am going back Wednesday (for 3 days) then am in for two full weeks when my boss is on holiday. I will then review it after that.

Sunny, I've tried the hat thing but I find it better using the sun visor in the van as its really big & it keeps the sun off my face most of the time. I do wear hats if I'm out & about at weekends. Always wear my SPF50 (which is horrible & greasy but is ok!) I don't have to wear a uniform, just shorts/jeans & t-shirt to thats a good thing to know about the sun protective clothing, only thing is that there is no air-con in the van so i'm boiling hot as it is without adding an extra layer but if they are really thin then thats a good & viable option.

Sadie, thanks for the SPF70 brand name, I'm going to look it up & order some as the SPF50 was the highest the Dr knew of. Also thanks for the clothing links - will have a peruse later! The one thing my partner suggested was that I ask my boss if I could go part-time but thats not an option as there is only one driver for the firm, as its a small firm, and only one large van which the driver takes home after the last drop. The other option is that I take Wednesdays off & the storeman that uses the other smaller van to get to & from work lets another guy (who comes in Tues/Wed to do odd jobs, a bit of driving etc) use the van on Wednesday to do my rounds that day.....will see when my boss is back from hoilday. I do, as you said, write everything down, all my symptoms, how I feel daily, my mood, how my skin/leisions are etc....my memory is awful...I put it down to old age, at 36!!!

Lola, I'll have a look at the Eclipse clothing/window shades in a bit on the Lupus site - window shades are an excellent idea for the side windows in the doors...as long asI can see through them clearly otherwise junctions may be a problem! I do however wear sunglasses & have about 10 pairs....if my boyfriend says anything about me buying them I can do the 'but its for my lupus' sympathy card so I can buy more pairs of groovy glases!!!:lol:

Lesley, thanks for the antihistamine tip. I already take cirtrizine for hayfever which tends to come on later on in the summer so I shall start taking them now & see if that makes any difference. As for the NSAIDS my doctor has never suggested them (not GP, Dermatologist or Rhumatologist but I'm on plaquenil and also painkillers.

Finally...I have considered the fact I may have to stop this job but I don't want to go back to office work again as it does my head in. The politics, back stabbing & b*llsh1t that goes on, especially when you get to managerial...in fact, as I typed that its afirmed its a no/no. But I'll put a seperate post up asking for suggestions on jobs in a bit.

Oh, and, finally finally (!) I've got my date for my initially appointment at St Thomas' through...thought it would be months but its 18th June..in a month!!! Its DR M Cuadrado. Excelent!!!! Going to put another post up about this as well....

Thanks again.
Fran
x

 

[greenhaggis]

Well Fran, it looks like youve up the anti in dealing with things!
I hope the time off work as helped ease the symptoms!

Re. Citirizine, I was told both by GP and Immunologist that it might take 1 month to have a proper effect for the rash/swelling they think 'might' be to do with heat/sun! I'm now taking a stronger antihistamine as citirize did not work!

I would still get you GP to research more on the Suncream 70SPF - I'm sure if he tried he could find one that is prescribable - if not try your specialist at St Thoms when you attend!

Love Lesley

 

[FranS]

Hi there,

I took the 5 days off (3 before weekend & 2 after) & felt so much better by the time I went back to work, no aches & pains, rash had gone down on my face, much less tired & had my bounce back. Thoroughly enjoyed being back yesterday.

Today however (2nd day back) I'm tired, rash on face is slightly raised, had a headache & my shoulders/ankles/wrists hurt. I can't believe it - its not even a very sunny day.

Must admit I thought it would take a lot longer to affect me again.

Worst thing is when I told my boyfriend (who I live with) he gave the impression that he thought I'd either invented it or was exagerating. He didn't actually say anything but I just got the feeling.

At least we have a three day weekend coming up.

Fran
x

 

[Lily]

(((((((Fran))))))))) Hang in there, hopefully once you see Dr. DeCruz you will get on some helpful treatment and this battle to get to work and have some level of normal functioning will all just be a big nightmare :hugbetter:

It's so very hard for our partners to understand what we are going through, after all we look ok and if you have been resting and felt better then how the heck can you fall in a heap again so quickly right ? That's Lupus I'm afraid and unless you have it then it's really difficult to grasp how it affects you. Keep the lines of communication open between you, in time he will realise that this is the way it is and there's no exagerration on your part it's just this crazy disease and it's unpredictability. Once on some decent meds you should have more good times and less of the crash and burn times.

love
Lily

 

[LoopyLoo]

Hi Fran,

It really sounds like you are getting your head around things - making the changes to how we go about our day to day life was one of the hardest things for me. It can be done and it's not so bad. The first thing I reach for after my shower everyday is my suncream - as you are in the UK your doctor can prescribe it for you. It may be cheaper for you.

As for relationships - From the first time a potential diagnosis of lupus was mentioned to me I have had to manage how I tell my husband things. He can deal with big stuff with the rest of the family but not with me.

I find that drip feeding important information is the best way and my hubby absorbed it better. That can be tough on us as we have to keep alot to ourselves but for me it worked in my favour and my hubby is now so knowledgable about lupus. He is now more receptive to information and is happy to learn more. It is not a slight against him in the least - sometimes men just find it hard to understand. I also found that when he came to appointments with me it helped and gave him a chance to ask questions. Encourage him to go with you to your St. Thomas appointment - Good Luck!

As Lily said, the best thing you can do is to keep talking.

Hugz, :hug:

Pam xxx