It feels like there sun is killing me

[sylviaweller_79]

Ive had lupus for 18 years but just recently the sun has been severely affecting me. I mean I know I shouldn't go out in sunshine for too long without covering but even for a short time now it feels like my skin is gonna catch fire, and I sweat really badly. Suncreams and lotions don't help and I'm starting to feel isolated cos I can't go out during the day. If I do when my skin has cooled down and I stop sweating I ache everywhere. Does anyone else get his? Or have advice?

[Hidden]

Hi Sylvia, is your lupus under control, at the moment ? I ask because I find when my lupus is good, I can tolerate some sunshine. I am really housebound this year like you, and hope it is because my lupus is not controlled. I am waiting on results of liver biopsy, to hopefully start my next plan of treatment. I have been diagnosed 9years, and, which I think you are implying, my lupus is getting worse. I hope that I will be able to enjoy the sunshine again, as I would love to be out in it. I cannot step outside my door at the mo, as I literally, wilt, in the sun and heat. No amount of covering up, helps. When I am well, I still cannot flaunt myself in the sun, but a hat and loose clothing, at least gives me some freedom in the shade. Like you, I cannot even do that now. It's all the consequences, that get me down, with this disease. More than the joint, organ involvement. I hope like me, we can only hope for future relief with these problems.

[lupus-support1 Administrator in reply to Hidden]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

It sounds as if you also need to see a lupus consultant. Is this a possibility because you sound as if you are also suffering because your lupus is not well controlled?

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

Be well!

Ros

[sylviaweller_79 in reply to lupus-support1]

Hi Ros, I tried to sign up to that site but it kept telling me my date of birth format was wrong. I tried all different ways but I kept getting same thing over and over. Can you please tell me the format that is required.

Thank you

[lupus-support1 Administrator in reply to sylviaweller_79]

I am sorry you had difficulty. The date format is: nn-nn-nnnn where n=number. If yo have any problems, email me roz [at] [lupus-support] [dot] [org] [dot] [uk]

Be well!

Ros

[sylviaweller_79 in reply to lupus-support1]

Thank you, I am now registered just waiting to be approved

[lupus-support1 Administrator in reply to sylviaweller_79]

You should have already received a welcome email from me. Any problems, please contact me at: roz [at] [lupus-support] [dot] [org] [dot] [uk]

With good wishes,

Ros

[sylviaweller_79 in reply to lupus-support1]

I got the email but on the site it keeps telling me my user name and password are wrong

[lupus-support1 Administrator in reply to sylviaweller_79]

I am going to reply to you by email.

Ros

[sylviaweller_79 in reply to lupus-support1]

Yea you was right I didn't enter username correctly

[lupus-support1 Administrator in reply to sylviaweller_79]

Glad to help!

[sylviaweller_79]

Hi thanks for replying. My lupus isn't as bad as it has been but it isn't exactly controlled either. My consultant likes to experiment with different drugs on me and at the moment I'm hardly taking anything which might sound bad but I think she wants to see if my body will start healing (if that's the right word) by itself. I agreed years ago to be a guinea pig because the disease was getting me down and I didn't care anymore, so they still try different things. Unfortunately, now I can't go out until its dark and its getting to me again. Maybe I need to speak to my consultant again.

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

It sounds as if you need to see your lupus consultant who may refer you to see a dermatologist. There are special UV protection clothes/umbrellas you can buy.

I am concerned especially because you say you feel isolated as a result of not being able to go out.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

Be well!

Ros

[Hidden]

Hi ros, thanks for welcome and advice. I do see a lupus consultant, dr Rachel Davies, formerly of st Thomas's hospital. Because of high liver blood tests, I have had to withdraw from immuno suppressants, until the results of my liver biopsy, have been deciphered. Until this problem started, with my liver, my lupus was fairly well controlled, hence my ability to tolerate the sun.

[lupus-support1 Administrator in reply to Hidden]

When do you get the results of your liver biopsy? It must be an anxious time for you.

With good wishes,

Ros

[Hidden in reply to lupus-support1]

Hi ros, very frustrating as I had biopsy 4th June. Was told 4 days for results. Have no follow up appt, and despite pestering gastro secretary, I still don't know. Didn't ring secretary till last mon, 16th, so I gave them long enough to sort it out. All this week, I have been on a promise of results being sent to my GP by Friday 20th. No surprise, my surgery have not received them. I was previously on azathioprine then methotrexate. All was stopped because of my liver. That was 2 years ago and it has taken all this time for someone to do something about it. I have dr Davies to thank as since she came to my hospital, things are not being left anymore. As I keep saying, my liver may not be serious, but my untreated lupus is. Tomorrow (Monday 23rd), I will be chasing them up again. I bet if they had an invasive procedure, they would not want to wait. Sorry for the rant, but sometimes I feel that these Drs are dictating my quality of life...

[sylviaweller_79 in reply to Hidden]

Try not to stress out, lupus is bad enough you don't want to agrivate it with stress. I do understand tho and sometime a rant helps

[lupus-support1 Administrator in reply to Hidden]

You are more than entitled to rant! This is unacceptable to be left in this way. It might be that coming off the immunosuppressants for a while has allowed the liver to recover but since the doctors seem unable to communicate, you are left in this worrying state. Can't your GP intervene as s/he may be able to speak to the doctor rather than the secretary?

With good wishes,

Ros

[Hidden in reply to lupus-support1]

Yes I think I will have to get some more help with this. Dr Davies needs to know what she can prescribe, but unfortunately my liver has not recovered according to blood tests. The other awful thing I forgot to say was, I kept having to explain that I am teetotal. Had a little alcohol I my teens, but not much as I was an athelete. I am 52 now, and can't even recall any alcohol in my adult life. I hope biopsy proves this. At gastro appt, I asked if this would finally be put to bed. He said, ok ok I believe you. To my GP he wrote...this lady drinks very little alcohol !!! Will also ring dr Davies secretary too. Think someone more level headed should take control now...hahaha

[lupus-support1 Administrator in reply to Hidden]

I am sorry that your blood tests have not shown that your liver has recovered. I am appalled by the assumption that you abuse your liver through alcohol abuse, which is the unspoken implication. There are many conditions which have nothing to do with alcohol such as non-alcoholic fatty liver disease or Nonalcoholic Steatohepatitis (I am not suggesting in any way this is what you have!) but to demonstrate how disrespectful and judgemental and how this adds to your distress.

If you would like to talk more privately, you can register at the LuPUS Message Board.

With good wishes,

Ros

[Hidden in reply to lupus-support1]

Thanks for your support. Initially, I wasn't offended by the suggestion as , after all it is the liver. But 2 years on, I am bored of it. US scan does show fatty liver, now need to rule out other probs. suspects are AIH, or PBC.. I am ok with it all, have had 17 years of 'puzzles'... I will bear in mind the message board. Thanks again.

[kazp]

I've had lupus as a companion for over 30 years and my skin has become more sensitive to the sun.

YOU CAN GO OUT............................. but there are rules

Dont go out without a covering at all, even when its cloudy.

Always wear a good sun lotion and apply regularly.

Wear a big sun hat.

Take mini bottles of suncream with you whenever you are out (I have some in the car and caravan.)

Scarves are good for neck covering.

[lupus-support1 Administrator in reply to kazp]

Good advice - there are special UV protective clothes. I believe there are some people at the LuPUS Message Board who may be able to help in this respect.

With good wishes,

Ros

[kazp]

thanks its so obvious but not ! not unless you have this problem. I've found though that so called 'specialist' sun screen and clothing is very costly. It pays to shop around and check out reviews on products

[LatinZest]

I got the same. I used to live in Guatemala and now I live in England it is a lot better. The only solution for me was umbrellas and long sleeves. But if it is too hot use an umbrella and say it is a "parasol" in Brazil (for the sun) to lighten the mood with your family and friends good luck.