'Mild' Lupus ?

When i was diagnosed, i was told my lupus was mild. I think it means that it's less likely to attack your organs. Lupus affects my joints and skin and that does not stop it from being very debillitating and at times extremely painful.

When i was first diagnosed my family were also in denial, and i think this was because they didn't want me to sick. I don't think they could handle it.They are thankfully very supportive now.

I was also diagnosed with 'mild' lupus, but this only seems to mean that it isn't life threatening (i.e. attacking vital organs) and has not felt in any way 'mild' for me.

I have been fortunate in that it has not effected me financially -in the sense that my husband works and pays the rent. I am a self-employed artist and garden designer so I can work when health allows and rest when I need to. I don't earn very much money at the moment as my lupus is flaring and I'm trying to sort out the best treatment to help. I've found that trying to balance rest, fun and meaningful work has reduced stress -stress is a big trigger for the disease.

It takes time for you and your loved ones to adjust to the diagnosis and the impact it has on your life. get as much info as possible and share your feelings here and with your family and close friends.

I would advise you to get the DVD from lupus uk to watch together and this will help you talk about it to those closest to you. When people understand the disease better, they are able to support you better. You might have to learn how to ask for support too (that's something I found hard to do! But I'm learning!). All the best xx

hi melinda

im too a mild lupie but when docs tell me this everytime i go with aches and pains i get so angry and say just because its mild doesn t mean i dont have pain and fatigue down days and very painful days.

i do feel fortunate that at the moment i don t have organ problems but i have everything else,it is an invisible desease so our friends,family can t see it to remind them that we are feeling ill.

im lucky because my husband has been great and so understanding along with most people close to me,however im very aware that unless they have lupus they can t possible know whats its like, and i occassionly have to remind them when im too tired or to uncomfortable for certain things.

i think a little patients on both sides is sometimes needed along with hugs and laughter too.

Hi Julie, I can say that Lupus has affected my travel insurance but I've found Virgin to give a really good quote for holidays. I haven't tried to get life insurance, but I have never been asked about my health for a mortgage and I've moved and so remortgaged twice since having lupus. I claim DLA at the higher rate because of lupus and its effect on my health. I also work and as lupus is covered by the DDA it means my employer has to take my disease into consideration at work. Hope some of this is of help. Angela x

Hope it all goes well for you and things settle down. It is hard at first but I hope your partner realises that you are still the same person inside....just lots going on until you adjust.

Hi Tillyana,

I too am self employed and the driving force behind our family. I was hyper as a child except for the down days! which looking back we know why.

It was my marriage that has suffered the most, and I know that this is going to sound very contraversial or whatever, but I am going to be completely candid with you. Your man is used to being the centre of your world, and this god forsaken illness makes that hard for you to continue with, but of all the things you need to do it is to give your man as much attention as you can. even if that means at times that are a bit oddball. This illness leaves us exhausted and falling asleep mid conversation, as it were, isn't very good for anyones ego.

The stress that not making time causes is a lot more destructive than the stress caused by making time for each other. You will find that that in itself will make you feel more secure.

I know for me personally, I look at my limits now and have to stop myself thinking negative things about myself that I then start to believe that other people are thinking it too.

As for burying his head in the sand, It is far easier to deny all knowledge than admit that your hero, rock, mate, lover, friend ..... is not as perfect as before. Especially if you are only half the force you were.

I always try to remember that all the things that I used to do and can't now, either my husband has to do for me, or I have to pay someone to do.

Luckily for me my husband has chosen to stay, but we have had to make big changes and sacrifices for it to work.

I hope this helps.

Just remember that tomorrow may bring a cure, or a respite or maybe even a good day!

This is only my experience, so it may not be relevant to you, but it took me 10 years to get here!

A few years ago we were turned down for travel insurance by one company. It wasn't my lupus that was the problem. It was because my husband had had an operation six months before. Even though he was fully recovered and as fit as fiddle, they still wouldn't insure us. We ended up paying through nose for insurance. Crazy!

Hi I have travel insurance through the Freedom insurance company which is advertised in the Lupus magazine. It will only cover me per visit and not yearly but it has just me £70 for this years holiday and the Lloyds wanted just under £300!!

I cannot get life insurance, I was diagnosed at 17 and Im 43 now so its not something I thought about until later life and by then it was too late. Funnily enough I've had no probelm with mortgages and Im self employed too.

To tillyanna and everyone who wrote a comment:

THANK YOU! I have had lupus for 15 years. I was never told that I have "mild" lupus, but after 5 years, I was told that my lupus would never attack any internal organs.

It has been so helpful to me to read each of your comments!!

I have never been able to understand why I feel so much pain in my joints and muscles when I was told that all of my blood test "numbers" are relatively low. My first rheumatologist told me that I had to go back to work as soon at my ANA turned negative!!....but I still felt terrible and overwhelming joint pain, muscle and tendon pain as well as debilitating fatigue. I also have osteoarthritis in most of the same joints that hurt because of my lupus.

Tillyanna, I know exactly what you mean when you say you collapse for a day or two after a day of work. I am a dentist, and when I got home from work at 5 pm, I went straight to bed without eating a meal or taking a shower. I'd have to stay in bed for two days. By the second evening, I felt well enough to sit up and watch television with my family. We have four children. What a burden for my husband to have to do EVERYTHING for 48 hours after I came home from work! The hardest thing was that my rheumatologist could not understand how much pain I was in. After 8 years with lupus, I started seeing a chronic pain management physician who prescribed very small doses of morphine to be taken 4 times a day. The medication was a godsend. It did more to make me feel better than any treatment the rheumatologist ever prescribed!

One of the most difficult things I faced early on was weight gain. During my second year after diagnosis, I was put on 20 mg of prednisone daily. I gained 90 pounds in 13 months. I am 5'10" and weighed 137pounds before prednisone. After 13 months, I weighed 227 pounds. I changed from a size 10 dress to a size 22 !! The excessive swelling and weight gain in my face made me think that I looked grotesque. My glasses cut grooves in my temples. I looked bizarre at best!! Worst of all, standing next to my athletic husband, I looked 20 years older than him! I looked like his mom or his aunt!!! Having "mild" lupus and taking prednisone made me feel and look like I had been propelled from age 31 into my 50's. And yet my blood lab test "numbers" were never very high!

I continued to see patients in my dental practice, one day a week, then one day per 2 weeks, then one day per month. I am a specialist in orthodontics. I treated only six patients and saw them all on the same day each month. I began losing money rather than making money, but I still wouldn't stop practicing because I love it so much. Finally, I lost $ 2,000in a year and I gaveup my practice. Two months later, my ANA turned from positive to negative for the first time in 15 years. My rheumatologist told me that I had to go back to practicing dentristry because I was in remission. I told her that I had just quit working 2 months ago and felt exactly the same as I had for years. She told me that practicing dentistry is not a physical job (What??) and that I was able to work full time. I found a new rheumatologist. He told me that he treats his patients based on their symptoms of lupus NOT based on their lab reports. Hallelujah!! I found a reasonable and compassionate rheumatologist.

I'm sorry that this comment got so long. I hope that others with "mild" lupus will read this and recognize some of their own experiences and difficulties. It helps so much to understand that you are not the only "mild" lupus patient who feels terribly fatigued and in pain. I would like to think that a rheumatologist may read tillyanna's question and all of these comments and learn something. . . . that a patient's symptoms do not necessarily correlate with the "numbers" on their lab report.

Tillyanna and everyoned here, I hope that all of you will begin to feel less pain and less fatigue. I hope that you have rheumatologists who truly understand,not only the science of treating lupus,but also who REALLY LISTEN to you when you describe how you feel. Finally, I wish that each of you will find that,once your partners accept that you are sick, they will be as kind, understanding, generous, tireless, steadfast and loyal as my dear husband has been to me.

Kind regards,

Lorelei

Hi I have 'mild lupus' and work part time as a cashier for a high street bank. I can assure you that having lupus does not affect you getting a mortgage or a loan. I took out a mortgage last year, and I had been diagnosed with sle for 4 years at that time. I have also taken loans out with no problem (and this has nothing to do with me being an employee). Life insurance was not a problem to get also, although I found it rather expensive (but our life insurance has always been more expensive than a lot of other places). Hope this helps.

Aileen

Hi. You can go on the net and find travel insurance for people with medical conditions. I got cover for me and my partner last year to go to America for about £75. Have a look and I'm sure you can find a cheep one. Hope this helps xx

Hi Julie, yes i have had problems with getting things, I think your doc. is right about that, But the thing is you do have Lupus, I have alot of pain. and I am very anemic. How bad do you feel? and do you take any meds for lupus? Love, Krisdy

Hi Guys, sorry meant to type small word not small world. Flippin fingers not working right again.

Re : meds - I am back on hydroxy as my new rheumy said I should stop it as I didn't think it was doing much so I did and OMG how wrong was I, within days of stopping everything came back with avengence (none of the pain etc went away just calmed down slightly) - fatigue,maylar rash,burning, tingling, numb hands & fingers, shooting pain in my arms, dead/lead legs, headaches, brian fog and muddle words and mood swings.

I also am awaiting back surgery for which I take a cocktail of pain killers but have to loose weight which is a vicious circle as I'm too tired to excercise, polyarthritis and suffer high blood pressure.

Thank you for all your comments and this sight is a god send for us all not feeling alone or that we are doubting ourselves too much.

I now write down everything as I only see my consultant every 3 mths. Awaiting nerve testing and dermatology apt. So will see where we go from here.

Thanks

Julie