She feel at a lost end

So sorry to hear this. When I was diagnosed 2 years ago, I felt the same way. You couldn’t even hug me without breaking out in hives. As you I stayed inside out heat couldn’t even wear shoes or I’d get hives on feet. It’s been a real struggle. Luckily enough about 6 months ago I started getting a break. Still have lots of itching, but not raised hives but here in there. I try to stay on a gluten free diet, which helps a lot. On my meds, which makes me extremely tired. But I no longer work either, all the steroids , meds, etc  started effecting other things. I pray that In time things will get better for you. Im blessed my husband has been a trooper the past few years and is supportive.  I’m dx with chronic autoimmune urticaria ... when my immunoglobulins are low I get worse, when they raise , I get some relief . It’s different all the time. Pray you get some relief and realize your not the only one who’s going throu this and it’s definitely been life changing. Good luck to you 

My heart goes out to you.. I know exactly what you mean about the hives.. I do not work and when i was having hives everyday and angioedema there was no way i could .. but I am retired now and grateful to be.. The only thing that helped my hives are the xolair shots.. I have taken 4 and now they starting to work.. they are extremely expensive around 2400.00 each but my insurance thank God pays for them.. Some ppl get help from the company to pay for them.. Talk to your dr about them.. See an allergist or someone in immune therapy field.. There is help out there tho mine is only a bandage and not a cure.. No one knows what is causing mine, I have had so many blood tests etc and cant have anymore allergy tests until i can be hive free for six weeks with no meds at all.. which at this point is impossible.. Try going gluten free I did not have hives them they only came back when i added gluten back.. But i dont really know that was the cause as i am not celiac and when i think i have found what causes them and elimate it they come back.. so for now I am enjoying being mostly hive free and getting my monthly xolair shot.. For many it is a miracle drug tho not without side effects.. But you can discuss all this with your doctors.. Good Luck .. Keep us posted how you are feeling.. This site is wonderful and lots of help ..

I also feel your pain and i’m praying that you will find some kind of comfort. I went through this for 3 years and had to work through the whole ordeal but had to take alot of sick days but sometimes i’d go to work feeling like a zombie because I had no sleep at all bacause of the chronic itching. Lucky for me it was everywhere on my body that nobody could see except my neck was full of rash and I didn’t get the other symptoms that you have otherwise I probably wouldn’t of been able to work either. I am allergic to everything under the sun also pressure heat most foods anxiety all those things make it worse i wish i didn’t have to work because that is where most of my anxiety comes from but i can’t afford to retire. I was able to go down to 4 days a week which i am thankful for. It’s a shame that doctors don’t know more about this when people are suffering. My husband was supportive also. Now i am on zolair 300 mg once a month which works about 80 percent. I can eat most things now without breaking out and can get some sleep most of the time. I get rashes around my waist and belly and sometimes hard to wear a bra  but overall feel so much better.  I’m blessed my insurance covered it. I would try to get in to see a immunologist they are the ones who know most about this because it has to do with the ammune system. Take pictures of your hives when they are worse because for me they would come ang go so with pictures she was able to diagnose me right away. I wish you all the best and don’t give up trying.  

I'd try and see an immunologist as soon as you possibly can. If it reacts going out in the sun, that could be solar urticaria? Often urticaria's come in clusters, I have cold, spontaneous, stress-related, allergy-induced and rarely delayed pressure. The painful joints and back and swollen fingers could be angiodema, but it could be rheumatoid arthritis. Immunosuppresants can help with all of that.

It is hard with partners, family and friends. People don't tend to understand how bad this is. There is a research paper on the psychological / emotional effects of urticaria. Maybe try to find it, and have him read it. It explains that urticaria makes a person suffer as much as as serious heart condition or cancer. Getting into the care of a specialist in Urticaria will help with that. They can also prescribe things like immunosuppresants, which are much better to be on than steroids. You could ask to be put on Dapsone first, as that is milder and works well for some people. They'll need to run blood tests with those.

Yes, don't take any OTC painkillers especially Ibuprofen, that drives my skin wild. Gabapentin can help with bodily pain, itching and sleep and help reduce anxiety / depression.  that. So can beta-blockers. So can tricyclic anti-depressants, and can help with depression, but has much more drowsy side effects. SSRIs can be sometimes be helpful too. It's important not to let anxiety and depression set in too much. Stopping it earlier is better.

I'd ignore your partners reactions and go easy on yourself. Just take it easy, forget about work, money and what people think. Get more sleep, eat very very healthily (mostly vegetables) and take up hobbies that reduce stress that you enjoy. You know you are very ill, and many people here have been through it. It is very bad, especially before you find treatment that works. But I promise, it does get better if you just accept that you are very ill and don't beat yourself up or let anyone else tell you how you should cope.

You could do worse than go on a paleo diet and kick common allergens, gluten, milk etc... 

Meditation, yoga, tai chi etc... will help you with the stress. Do try to get outside to walk, it will help with depression and anxiety and join pain, but use a broad hat and cover your skin. If it's solar urticaria, it won't react if your skin is covered. Sometimes, you can have cold urticaria and it will be the wind, not the sun. Do a test with an ice cube on your arm. You can do a similar test with the sun on just a patch exposed on the lower side of your lower arm. See if hives or itching starts where it is exposed to cold or sun.

Work is tough, I had to give up working for other people for a while. But now I work for myself, control my own timetable and can take time off when I am struggling. When you are better, you can have a think about what could suit you for work. But don't worry about it for now. Sometimes the stress of life and especially work can be one of the causes of this. But for many people urticaria runs it's course after a couple of years. I know that's a long time, but it isn't a lifetime's curse for most people. But do get checked out for rheumatoid arthritis as that can be treated, but does harm if it isn't. 

My heart just breaks for you Michelle.  As bad as mine was a few months ago, yours is worse.  Definitely try the Xolair injections!