I have only been diagnosed with chronic spontaneous urticaria and delayed pressure urticaria recently. It started this February, with every day since I have been so poorly. The usual head to toe with huge chronic hives, swelling of the face, lips, eyes, so numerous hospital visits. I have bowel problems which they think is linked and been told I have not got degeneration of the spine. In the last few months I have really become depressed as I'm in constant pain in all my joints which the consultant has told me is the pressure on my bones. My hair is falling out maybe due to the medication, I constantly feel sick, extreme fatigue, and anxiety. I have changed my whole life where I keep out of the sunlight, try to keep cool, wear loose clothing etc and had to give my job up.Before, I worked full time for a charity, loved being outside, wore what ever I liked, and enjoyed life. My partner says he understands but is constantly on my back to get back to work. When I exhausted he says I'm lazy, and when I say I don't want to go in the heat he gets bored of frustrated as it restrictes me going certain places. When I have trouble walking through pain he tells me to hurry up and walks way in front of me, which puts pressure on me to hurry. This just makes me more anxious which makes my hives go crazy. He seems to think this is going to get better and everything will be back to normal. He came to the consultant with me and he explained this can be disabiling and how it affect me but he thinks it's all attention seeking. What do I do? I know there is no cure and my illness still isn't under control. I have two children, buying a new house at the moment and we are due to get married very soon. I can't promise to get better quick as I hear people with this condition have it for years. Please anyone who has been through this or has any advice, I would very much appreciate it. I can't speak to my surgery as they have said we have never had a patient with this illness so we know nothing about it. I don't have anyone to share just how this illness is wrecking my life.
Michelle, I'm sorry you are feeling so unwell. What drugs are you currently taking?
20mg of methotrexate a week, 40mg cetirizine a day, 10mg montelukast, a day, folic acid once a week, 40mg prednisolone a day, and ranitidine. Waiting to try dapsone soon. Just so fed up. And I feel guilty that there are people out ther much worse than me but I'm getting myself into such a down state.
When I read your history, it sounded very similar to mine from the fatigue/pain point of view & it is only very recently that one of my consultants did a raft of blood tests, which has thrown up a deficiency in Vit D, which causes a lot of the symptoms you mention, joint pain, bone pain, fatigue, brain fog etc etc..
I haven't actually seen that consultant yet but my Derm consultant saw the results & has prescribed Vit D tablets for me. I hope to feel better but am aware that it takes at least 3 months.
Try asking your doctor to do a Vit D3 blood test - it is 25-hydroxyvitamin D
I used to take MTX [Methotrexate], then Dapsone, then Mycophenolate Mofetil [MMF] but have stopped those & am only on prednisolone at the moment & some other drugs. But, like you, I avoided the sun because these drugs can cause other problems in the sun
Do ask about having your vit D levels checked
https://patient.info/health/vitamin-d-deficiency-including-osteomalacia-and-rickets-leaflet/symptoms
There is a lot to read but it is helpful.
Ok brilliant I will do. Thank you x
Hi Michelle, this is heartbreaking g read, it's so frustrating that so little is known about this condition and also how people (even close family members) don't realise how debilitating and life changing it is! I really feel for you as it can be so isolating on top of the daily suffering. You're situation sounds very similar to mine, I had a lot of time off work and nearly gave up my job, I lost my social life and became depressed. As mentioned above I had vitamin D deficiency and was put on medication for this. I found the predisalone side effects were causing my joint pain and some bowel issues. I also discovered that some foods were an issue for me, I seem to do much much better when I avoid salicylate, histamine, MSG and any preservatives and colourings. I looked up the royal prince Alfred elimination diet and joined a failsafe group on Facebook that helped me figure out how to use my diet to help me manage my condition.
Because I haven't really been able to manage my hives with antihistamine (I will not go on long term steroids) I have been offered Xolair injections. I am currently 6 months pregnant and Thai seems to be keeping my symptoms under control, but should everything flare back up again I will be having the injections after birth.
Another thing I find makes mine worse is fragrances, products, scented candles etc.
Everyone is different and it's a tough journey trying to find your own way to manage as best you can. You really do have to fight this with your mind because as soon as it grips you and you feel there's no hope it's a slippery slope and chances of getting better decrease! I do feel that your partner sounds as though he doesn't really appreciate what you're going through, but this may partly be because he just wants things to snap back. This condition definitely has a direct impact on partners and kids. Sometimes how they respond is unhelpful but is usually because they don't understand. I wonder if there's another way to help your partner realise how bad this is for you sobthat he can be more supported?
Avoid stress as much as possible and build in a self care routine to help keep you sane. That may be as simple as going for a short walk each day, watching some inspirational ted talks or whatever floats your boat (I found Epsom salt baths helped).
I am 2 years into my journey, I'm not giving up hope yet that it will eventually go away xxxx
Thank you siobhan,
This site is so lovely in that you can speak to people who share the same day in day out illness. You would of thought by now there would be something out there for us, or even general practitioners to have some understanding. I worked before with domestic violence victims, so that was my reason for having to leave including children. I couldn't commit to the stress levels of 15 plus victims a day with this condition. Like you said stress just makes it so much worse. But I do miss it so much. I'm great at helping others and giving advice, not so great at sorting myself out. If this illness was more recognised, more support groups, people with this condition would more likely cope better. As it seems to me at the moment like professionals think " we don't know much about it or what it does" so sweep it under the carpet. If my hives go on to my face and I swell I stay at home now. Local hospitals can't help. I just wait till I see my consultant every 6 weeks and take more steroids in between. And there has been times where I have had to pop to the shop with swollen eyes and fat lips to stared at as if I have been beaten up. No point in explaining I would be there all day ha ha. Anyway thank you again I really appreciate all the comments on here, itbreally keeps me going x
I was on the cetrizine and the montelukast but they didn't work for me. However the levocetrizine and plaqueneil combination alleviated all my symptoms
Hi Sebastian, how long have you had this condition and how long did it take to find the right combination of meds.
Had it from Nov 2014 to July 2015 and I started the treatment(plaqueneil and levocetrizine) in July of that year. Been hives free ever since. P.s I did alot of praying to God and Jesus during that duration
I shared my story on this forum if you read been cured for two years from angioedema and hives
I agree with what siobhan said and wish I could add more, but she gave you some good advice. Please don't underestimate "stress", it can trigger flare ups and make everything so much worse. I wish the best for you.
Bless you! Are you from Uk? Funny you should say about domestic violence work, I also work as a team leader in a domestic violence charity and can totally appreciate how stressful it is, I have found it so hard to struggle through, I'm fortunate I dibtvdo durect work with victims, it's not the kind of work you can do while suffering with hives and undoubtedly makes it worse due to the stress. It's good you've taken time out. I agree some support groups would be so helpful but there's nothing! Other than forums like this! I have also needed to learn to put myself first for a change! Xx
Yes I'm in the uk, Kent actually. I really miss my work so much. Funny people never understand how you can work in this industry but I loved it. Making one small change to someone else's life meant everything to me. Gives you a purpose to life. Maybe that's half the problem. I need to find something that will fill that absence with something just for me to relax and enjoy. My goal is to get this problem under some sort of control then go back for half a day then so on. I miss working in the front line but I don't miss the quarterly stats one bit lol. I sat here the other night thinking how could I set up a support group near me, buts it's such a rare thing I would be the only person sitting there haha. I haven't met anyone who has even heard of it let have it. Only on here and everyone is so wide spread.
Hi Michelle,
Your symptoms sound particularly brutal. So I wish you nothing but the best. I don't know how old you are, but your partner very unsupportive. Hopefully, they'll come around otherwise, drop them. As a divorcee myself, I know I ignored the writing on the wall before I got married. Just recognize that things may not get better or may take a while to get control over healthwise so the less stress you have the better. Stop doing all the things you can that are stressful. Do what you can to enjoy the fact that you are in fact . . . alive. Hopefully, you will be able to return to work soon but maybe in a new field.
The symptoms you described sound like more than typical Chronic Intermittent Urticaria (CIU) or hives, which is not associated with pain of any kind except if swollen at bendable joints. The fatigue if not due do medication is unusual, too. CIU is triggered by mast cells or macrophages due to a rogue IgE sensitivity to either a real or not true allergen. H= Histamine, the substance wreaking havoc in our bodies, is abnormally released. My doctor has not found auto-immune antibodies or immune-related chemicals in my bood but CIU is an abnormal immune response even no organ or tissue is being specifically attacked like RA, SLE, or UC. Learn as much as you can about the illness- go to American Association Allergy Asthma Immunology website or other reliable source. Better learn your medical terminology and Mneumonics- everything is on Google.
I've been dealing with CIU for 7 months and it has affected my life, health, and attitude; I really do try to find the joy in it and appreciate the small things. My hives recur monthly for about 1.5-2.5 weeks each month and do not appear to be responding as I'd hoped to Xolaire injections q4 weeks so my doctor is increasing them to q2 wks so I'll see what happens. The fight to control the disease has negatively affected my overall health due to high dose prednisone, which led to rapid weight gain (20 lbs in 4-months), bloating due to water/sodium retention and what had been an out of control appetite along combined w/bad food choices. I literally had just celebrated a 15 lb weight loss through lifestyle modification and diet and had just had a physical exam and annual labs that showed me to be in great health in 12/2016. Now in 8/2017, I am likely diabetic (increased blood sugar & glycohemoglobin), have mild acute kidney injury as my creatinine is above normal, and elevated BP >130/70 (pre-hypertension), which is all attributed to the treatment for hives or more specifically prednisone. This drug is a blessing and a curse for all its side effects. Talk about having to make significant life changes. I'm not motivated to change because I want to or have the energy too but because if I wanna stay healthy for decades to come, I have to make major changes. Fortunately, my appetite significantly decreased (no more intense food cravings) as my prednisone dose lowered to around 20-25 mg/day. I noticed that hydroxyzine (Atarax) q 6hr may also be decreasing my appetite. Anyway, I take 8 different medication throughout the day to combat the CIU - all anti-inflammatory, antihistamines (3 types), a leukotriene-blocker, H2 blockers (2 types), and low dose tricyclic antidepresent w/H1,H2 blockage; the plaquenil will make #9 (used like an anti-inflammatory) so it's not surprising there were negative side-effects beyond just sedation, dry mouth and sensitive teeth. I was already taken 4 of those 9 meds already for perinneal allergic rhinitis. The doses are higher for CIU.
My point is that this illness is a struggle for everyone and a lifestyle changer. There are counselors out there to help if I need it, and I like my allergist and her staff. I am going back on a medication whose side effects scare me a bit, hydroxychloroquine (Plaquenil), but my allergist says many pt's get good results except it takes at least 3 months to notice any difference. The drug costs me $0.88/pill and I had stopped it after 2.75 months the 1st time cause it didn't help and made my teeth extremely ultra sentitive and I'd already been usng Sensicare toothpaste for 18-20 years for this problem.
If not contraindicated, I would get the annual flu vaccine if you are taken an oral steroid to decrease your risk. More secondary infections associated with taking steroids. Otherwise, the main drug, is the anti-H once or more daily.
Wow you really have good knowledge of your medications. It does sound particularly more educated in America about this illness. Over here in the uk we seem very behind. Well that is my experience over the 6 months. I also put 2 stone on since February and refused a few weeks ago to continue taking prednisone. Here in the uk I think it's easier to chuck you on steroids rather than try to find the right medication. Hopefully when I get an appointment at guys/st Thomas's in London things will gradually get better. I do have a annual flu jab as I have asthma so at least I can tick that off my list. When I paid to see a consultant dr gratthan he did explain the joint inflammation and pain I was experiencing was due to the delayed pressure. As even laying in bed hurts and I wake with hives on the pressure points like my hips, back, side of face. I have to say I have felt more positive recently since chatting to some wonderful people on here. I will definitely look at this sites you recommend and also look into the meds. Thank you
Maybe when you're feeling a bit better you could do some volunteering 1day a week and then build up to going back to work. It is a rewarding job and deginately gives you a sense of purpose. You can find that in many things though depending on your mindset, main thing is making health your focus for now so that you are actually well enough to help others and do the things you love! I will be finishing for maternity soon and will not miss the stats one bit either haha! Xx
I agree with you on that. Many days I wanted to skip class because of it. Try to stay positive and remain as stress free as possible. Allot of my flare-ups were worse when I was super stressed
I'm really sorry you are going through this don't let anyone make you believe its in your head continue bugging the docs until they get to the bottom of this.