What do you think?

[Iwantaboat]

Hi. I joined this group because I really need help and advice on how to deal with my health issue and the fact I feel I am not being taken seriously. Throughout my life I've had periods of anxiety and depression, but have otherwise been pretty healthy all in all. About 4 or 5 years ago I began to notice that I was feeling tired a lot of the time. I tried to rest as much as I could, but nothing seemed to help. It would start with me feeling a bit under the weather and would result in me feeling wiped out for days, weeks or even months t a time. Next thing I started to get a lot of kidney issues and had suspected kidney stones on multiple occasions. Around the same time I began to get a lot of coldsores (mainly in my nose) and peeling skin on my palate. I also seemed to develop allergies to things that I had previously been ok with.

About 2 years ago I started to suffer with my joints. It seemed to be off the back of a time when me and my husband went for a walk one day. It was boiling hot and we got lost. We walked for hours and my sandals began to rub my feet. Because of that I was walking on the outside edge of my feet. The next day I woke up practically unable to walk. This lasted about 6 weeks and after that my joints seemed to take it in turns - or all play up together. At this point everything still seemed a bit vague and something that could be fixed with healthy eating etc. I then started to see a pattern emerge were the feeling under the weather, coldsores and joint pain/swelling/bruising would just happen. I could literally be fine when I woke up in the morning and by lunchtime I'd feel like a steam train had hit me. interestingly though, exactly the opposite could happen too - I could be in pain etc for weeks and suddenly (literally) be completely pain free and feel fine.

Last year I had a severe allergic reaction after drinking an energy drink I had bought on my way to the gym. I was lucky in that a pharmacist saw what was happening and I was taken to hospital just in time. That was never followed up. I was simply told to carry an epipen and not to drink that drink again!

Since that has been the same old-same old pretty much. I'll have flare-up and then be ok; I'll react to a washing powder and then be ok; I'll have a rash on my chest or foot for no apparent reason, my whole body will itch or feel like my skin is on fire - and then I'll be ok; my veins in my wrists will swell and feel as if I have battery acid for blood - and then be ok.....

2 months ago I called my GP in tears. I was so sick to death of feeling tired, of being in pain and generally not knowing if whatever this was, was going to go away. The answer I got was "well, it could be fibromyalgia I suppose. Lets see how you get on with HRT for a couple of month. I think you'll find that will be a big help. We can also give you some antidepressants. Failing that we can think about a rheumatologist - but let's give it a few more month. I declined the antidepressants and chose to ignore what may as well have been, yet another pat on the head by someone who clearly thinks I'm a crank. I ran with the very provisional diagnosis and set about looking for ways to reduce stress and look after myself.

Now the HRT has been a god-send in terms of some unpleasant perimenopausal symptoms I was having, but not the pain. About a month ago I decided I needed to step-up my self-help efforts and planned a spa night for myself. I bought some really nice bath salts plus lotions and potions for both in and out of the bath. I stuck cucumber on my eyes and felt sure I'd soon be transformed into a vision of youth.

Now I'm not sure what your vision of youth is, but I bet its not something that could be mistaken for a sumo-wrestler that been stung by a swarm of bees and beat up by Mike Tyson - all after eating something very dodgy! I was literally unrecognisable. My whole body, but especially my face and legs had swelled massively. I could barely open my eyes. I had a rash on my face and blisters on my neck and chest. My skin on my legs had cracked, meaning the fake tan I'd plastered myself in was now making me look like tiger bread. I wasn't feeling much like being patted on my bloated and blistered head, so I decided to go to a private GP instead of my own. I was prescribed Prednisolone and given an emergency referral to an allergy specialist. The questions were all very specific: are you allergic to insect bites/stings? Medications? Foods? Anyone in your family have autoimmune diseases? Does this happen/. Does that happen? What was in the cream? Blah, blah, blah........"it iOS not a straight allergy. This is autoimmune. You are having an allergic reaction, but because of what is going on inside. We need to start you on some medication while we take you off the steroids and check what happens. After that we can do testing."

Me being me I couldn't help but doing my usual research in hope of hints and tips for self-help mode. Pretty much everything I came across said lupus. I sent an email to the clinic to ask if this was what was being suspected and I was offered an appointment the very next day to discuss. The word Lupus was not mentioned. I was simply given an explanation as to how it would manifest and why I was given the medication I had. I was also told that as the steroid dose is reduced I should expect my symptoms to return, if in fact it is autoimmune. I am now hopefully very close to stopping the prednisolone. The dose had to be reduced very gradually because I was having issues with my heart rate becoming erratic. I'm now at 7mg/day. The rash on my face has started to return and actually looks like weeping coldsores next to my nose. it can't be coldsores because He put me on a high dose of valaciclovir. The sores in my nose and mouth can't be coldsores either, for the very same reason. The blisters and blotches on my neck keep showing back up, but this seems to be lasting less than a day at a time. The pain in my joints is also coming back - as is the burning in my veins. My stomach is just starting to give me trouble again and the ringing in my ears is off the charts.

What do you think? Is it possible I have lupus and my symptoms are returning because my steroid dose has reduced? If so, is it still possible for me to have the stomach issues and skin rash, despite him also prescribing me high strength anti-histamines and another medication for my stomach? OR, am I a crank who deserves a pat on the head and a few "there-there's"?

[Chris21]

what do your blood tests show? There are a lot of autoimmune disease so it would be difficult to say if your symptoms s are caused by lupus alone. I personally do not have many allergy reactions as you. I will get rashes if I’m out in the sun, legs might swell. I’ve never had to have an epi pen. Hopefully now you’re under an allergy consultant , they will get to the bottom of what’s causing your illness and if necessary refer you on to the appropriate department.

You’re definitely not a crank! Hope it’s not too long before you start getting some answers that make sense. 🙂

[Iwantaboat in reply to Chris21]

Hi

I've not had the blood tests done yet. I've been told there isn't much point until I come off the prednisolone. I also need to be free of antihistamines for at least 2 days. I've already been tested for RA a few times. This is mainly because my Grandma, Great Aunt, mum and sister have it. The tests for that showed up negative.

[citygirl1234 in reply to Iwantaboat]

Hi,

Sorry to jump in but just wanted to flag that you can have seronegative RA, so they shouldn’t be excluding RA on the basis of a negative / normal anti CCP or rheumatoid factor test alone. If you have joint inflammation sometimes they can use ultrasound to confirm a diagnosis. It would be good to get it excluded if they can though.

see nras.org.uk/resource/seropo... for more information.

My mum has seronegative RA.

[Partner20]

Your myriad of various symptoms could be due to so many things, including fibromyalgia, autoimmune conditions such as lupus, food allergies, substance allergies and vitamin and mineral deficiencies. Yiu could have just one condition, or several issues going on. As the previous poster has said, the only way to investigate your symptoms is for a comprehensive range of blood tests, from basic FBC to ANA antibody checks. I have found rheumatologists to be extremely helpful and supportive, but a referral to rheumatology would be dependent on positive RA and/or ANA results. It may be that allergy or immunology testing would help, or scans of problem muscle and joint areas, but, again, you need the co-operation of your GP to test and/or refer. Unfortunately GPs seem to bury their heads in the sand when presented with multiple symptoms and complicated cases, so you may have your work cut out. List your symptoms, how they affect your life, (and any link you have as to what might be causing them), and ask your GP what steps can be taken to investigate them. This could be a very long process, but I hope you find some answers in the end.

[Iwantaboat in reply to Partner20]

Hi

Yeah it was only 2 months ago when I asked my GP to refer me to a rheumatologist and she said I had to wait until I'd given the HRT a chance. I've had multiple tests and not an awful lot has shown up. The multiple blood tests I've had have only shown up that I have microcytic anaemia, high blood sugar, high cholesterol, high levels of urea(?) and more recently, very low testosterone. I didn't even know that was a thing for women. Other than that I've had a bone density scan and an MRI scan. All they showed up was that I had a slight skeletal anomaly. The joint pains started approx 2 and a half years ago. The only thing I know for sure that can set things off is stress. I usually have a stressful situation, followed by an upset stomach, feeling tired, generally unwell and burning up a bit. After a few days the pain in my joints will start. Sometimes my knees (especially my left knee) will bruise. My other joints don't though. They just hurt. What's also happening more and more is that I'll get coldsores in my nose and the skin on my palate peels. These don't hurt. The only reason I know they are there is because it's not pleasant having big sores in your nostrils - and my tongue can't help playing with the peeling skin on my palate. The burning in my veins is also happening more frequently, but the only place I feel the burning in my veins is in my wrists.

When I had the recent "allergic reaction" it took place over the space of 3-4 days. I thought I'd eaten something dodgy because it started with a horrible stomach upset at the weekend. I was in agony with it and was sent home from work on the Monday. On the Tuesday morning I felt really itchy and agitated. My trainers were really tight when I put them on and as I was already feeling grumpy and rubbish, I just started hating myself for being so fat that my trainers no longer fit properly. By that same afternoon I started to get blisters/hives on my neck and I noticed my glasses were hurting my nose. I didn't realise at the time it was because my face was swelling too. When I got home from work I just said to my husband "have you seen this rash on my neck? It looks really bad" and he said "yeah. You have a rash on your face too and it's all swollen." When I looked in the mirror, just the skin either side of my nose, up until were my cheekbones are, was red and blotchy and looked really swollen. I'm not sure why, but it was worse on the left than the right. it was the Wednesday morning were I looked at my worst. I automatically assumed it was an allergic reaction. It's because of the actual allergic reaction I had last year that I was prescribed Prednisolone. I was also referred as an emergency to an allergist for the same reason. He said he didn't think this was a straight allergy, but autoimmune - then he said it was an allergy, but because of what's happening inside my body. He then prescribed me high dose antihistamines, something for my stomach and an antiviral. He told me to reduce the steroids and expect to have a return of symptoms if the issue is autoimmune. while reducing down my joints have started to hurt again, my veins are burning, I did get a huge cold sore on my lip (it can't be a cold sore if I'm on medication to prevent it), I did get a few weeping sores on my face next to my nose too. Not something I've had before. Perhaps the two most annoying things that are happening at the moment are the swelling and the ringing in my ears. The only reason I'm not completely off the prednisolone yet is because I caught covid last week. So the "reaction" started almost 4 weeks ago. I have another week to go on the medication and just feel like the original symptoms are threatening.

[Chris21]

might be a silly question, but do you take photos of your symptoms, like when your face swells or any part of your body, your rash, if possible the sores in your nose and peeling mouth and do you keep a diary of what happens each day? It’s a pain to do all this but I bet every time you visit the GP/ consultant not all of your symptoms are showing, so all they see is what’s in front of them.

It does sound like they are moving in the right direction by thinking that it is possibly an auto immune disease but which one is the question? As others have said you may not have just one thing occurring and unfortunately it is a slow process to get a diagnosis. Mine was 7 years back and forth and pancreatitis causing lupus sle to appear and when I think back over the years, I think it probably was starting in my teens but not enough for anyone to pick up on what was the root cause. Frustrating as it is, hang in there hopefully it won’t be too long before they come up with an answer. Hope you’ve recovered from covid.

[Iwantaboat in reply to Chris21]

Hi Chris21

Yes I do take photo's. I started to take photo's of my joints about 2 years ago. The symptoms were so erratic, and appointments with my GP so difficult to get, that by the time I was seen, the swelling and bruising etc might have gone away. I even manage to take photos that showed my veins swollen and irritated - the veins in my wrists would swell to about half way up my forearm and the skin around them would go red and feel hot. Obviously you van't take a picture of what it feels like, but it is clear from the photo's where the inflammation is. I didn't take any pictures of the cold-sores in my nose and ulcers in my mouth (until last week) because I didn't have a clue this was even remotely related. I told photos of the rash on my face and legs plus the hives on my neck and chest a few weeks ago. The main reason at the time was because I wanted to gauge how well it was healing. One interesting thing I noticed was that as I dropped the steroid dose, the rash on my face started to threaten again. This time it looked almost like coldsores either side of my nose - just where my pores are. Obviously if I'm taking valacyclovir this can't be the case. I did get a huge ulcer spanning my whole of the inner part of top lip too. I only realised that the allergist was suspecting lupus about 2 weeks ago (and from little things he was saying). When I asked him he just nodded and said we need to get you tested and that I need to take very good care of my skin in order to prevent any scaring. I was then seen by an emergency GP soon after that because my symptoms were returning much quicker than expected and I was also having issues with chest pain and my heart-rate souring. She told me to stay on 30mg of prednisolone for a few days and said her first thought too, was this could be lupus (after I'd told her it had been lauded to with the allergist).

I haven't followed up on the rheumatology referral just yet because I didn't want to complicated things any further. However, the menopause specialist I have been seeing (again on a private basis) in the hope that all the other symptoms I was having (the exhaustion and body aches and pains etc) could be attributed to perimenopause and so helped with HRT, is now telling me that the HRT she has put me on could actually be responsible for a lupus flare-up. She is saying that it is possible that the majority of my symptoms could be due to whatever this is, brewing under the surface, and that the HRT has exacerbated things. Point being, I think I should forget worrying about complicating things and follow up with the rheumatology referral, in conjunction with the allergist.

[Chris21 in reply to Iwantaboat]

hi I want a boat,

Ooh I was told to use HRT cream because I’ve sjogrens as well as lupus and with age have dried up like an old prune! I had a really bad reaction when using it. I was in agony with joint pain and a rash appeared, the GP told me to stop using it immediately and it all gradually settled down. Although I do know a lot on the forum do use HRT treatment and have no reaction.

It feels like walking through a minefield sometimes and takes a while to actually understand what is happening to our bodies and what works to keep well. This forum is great, when I first joined I had never heard of lupus and learnt a great deal from reading what others were dealing with. Some have other conditions that are not relevant to me but still have suggestions that are helpful. Do let us know how you get on 😊

[citygirl1234]

Hi Iwantaboat,

I don’t think you are a crank, far from it. You’ve been through a lot. I know it probably feels like a cliché but the road to diagnosis is often long and winding. From the sound of it though this allergist is taking you seriously which is a good start. If it turns out to not be allergy, he can refer you onto the right specialist. (Often referrals come through quicker if they are interhospital so hopefully if that’s the case that will be true for you). I think we all wish people could be diagnosed easily and straight away but sometimes (particularly with AI conditions) it can take a while for the “right” conditions to present so you tick enough boxes for a diagnosis. (This is ignoring any other delays in finding the “right” doctor who will listen and get to the bottom of it, getting appointments etc.)

At this point keeping track of your symptoms and having support from someone who will listen to you, is non judgemental and understands is most useful, as well as having a good medical team. Regardless of what you are diagnosed with at the end, having someone to listen will help. This forum is great for this, but if you want someone else to talk to on the phone The Wren Project are worth talking to.

They help people who have or are suspected to have AI conditions by providing someone to talk to, so you have someone to talk to while you are trying to get a diagnosis or whether you have one but are still coming to terms with it. Your doctor can refer you or you can refer yourself on their website: wrenproject.org/. Note: their support is predominantly mental health related, but once you have a diagnosis or a suspected one they can help point you in the direction of a condition specific condition, like Lupus UK.

I hope this helps you