Two Year Update

I don’t want to write this update.  I haven’t been around at all the last six months, waiting to come back and tell you all I am finally clear of this beast.  The reality is not kind.

I am sitting here with my face a giant open wound.  Weeping to all hell – pouring off me.  It started at work today and I can’t establish a cause.  It’s been happening every few weeks for the last few months.  Probiotics is one trigger I have identified but haven’t touched them for two months.  I don’t cope well when I’m like this.  I tend to randomly panic and cannot be left alone.

My skin has been flaring badly since March.  I have been in  a lot of pain and discomfort again.  Swinging between mild optimism interspersed with flecks of determination to debilitating depression.

Below is a list of symptoms I still get vs the first few months when flaring was also bad.  I’ve probably missed some symptoms.  Remind me and I’ll add them in.  You know – things like our brains don’t function properly, no memory retention or ability to concentrate – stuff like that.  I won’t post any photo’s because looking in the mirror is hard enough, so I’ll save us the distress.

Sending you all love,

Ruby Red

SYMPTOM FIRST SIX MONTHS MONTH 18-24 
Burning red skin On fire.  Burning hot to touch, painful and very swollen.  Rising prickly heat in body regularly. Didn’t want to be touched.  Visibly look super red like a tomato a lot of the time and non stop for first 5 weeks.  Cannot tolerate direct sunlight at all. Inflammation visible with flares but burning sensation not very noticeable.  Only face goes super red and subsides after a few hours.  Skin not burning hot to the touch.  Can still feel a chinese burn sensation when moving, stretching out limbs etc  Cannot tolerate direct sunlight at all on face.  Other parts of body can take some sun. 
Oedema/Swelling/
Lymph
Face neck and rest of body swollen to the extreme.  Leg pain from oedema.  Force myself to exercise and move lymph which helps significantly. Rock hard glands – sore and painful  Working on my feet all day – so oedema at end of day – sore lower legs and ankles. Swelling subsides almost completely after a day of being horizontal. Swollen face, skin cracks with swelling on cheeks.  One lymph node permanently rock hard.  Swelling in others comes and goes but aren’t that painful.
Nerve issues Highly sensitive to everything, nerves exposed.  Air on my skin caused pain.  Clothes, even the softest fabrics hurt me. Shooting electric shocks through body.  Getting dressed reduces me to a sobbing, whimpering mess. Still don’t want people near my face when flaring but can cope fine with rest of body. Sensitivity to outside stimulation is more normal and not too painful. No more electric shocks.  Getting dressed is tough somedays but I manage.
Itching Ok for first couple of months then insane as the burning inflamed skin subsided.  Used antihistamines, herbs and “failsafe diet” to help get under control.   Bad but not insane 99% of the time.  Still use herbs and diet to control but have not used antihistamines for 4 months.  (not sure I am an idiot for foregoing these but trying to stabilise mast cells)
Temperature dysregulation Shakes & chills.  Flu – like symptoms.  Buring hot to touch and feel ilke my skin is on fire but swing between icy cold/can’t get warm to rising prickly heat on the inside.  Need ice packs constantly and need to stand in front of air con to cool down.  No sweating. Fine.  Don’t cope well in heat or poorly ventilated areas (eg hot car).  This can trigger a panic attack but mostly ok.  Have regained some ability to sweat.
Weeping skin Ears constantly weeping.  Eyelids and lips very swollen and sore – have to soak them open.  Wounds on face that weep but in distinct areas.  Wet wounds also on arms, breasts, shoulders, legs.  Cannot heal these wounds.  Wounds above knee and inside calves are the worst. Face and neck is a giant weeping wound every few weeks.  No distinct area.  Worst it has been in entire two years.  Serous exodate pours off me.  Includes nose which to this point has remained unaffected.  No wet wounds on limbs, torso.  Hands/fingers cracked sore and swollen.
Insomnia Didn’t sleep much but after Month 1 I wasn’t working so could rest as much as needed.  Used polaramine and dyphenhydramine to knock myself out.  Only sleep on couch and able to fall asleep on my left side and slightly upright. Emotional wreck because I can’t sleep when flaring and I have to work 6 days.  Not taking sedatives or antihistamines which has left my body floored with exhaustion. Can’t sleep a wink when my face is oozing. Sleep partly sitting upright on back.  Can’t have face on pillow at all. Don’t want partner in bed with me again.
Depression Ok mood.  Very emotional and obviously miserable but not depressed.  Feeling determined, setting goals, coping ok mentally. Suicidal, not coping well.  Along with with weeping wounds on face this has been the only symptom to get progressively worse.
Anxiety Regular/daily panic attacks.  High overall anxiety High anxiety with weeping facial wounds.  Mostly under control at other times but may be due to controlling my environment as much as possible as well as calming herbs that I take daily.
Stinging skin/tiny cuts etc Bad.  Everything felt like lemon juice in a paper cut.  Water felt like acid. Manageable.  Acrylic nails have been a huge help to keep skin barrier in tact – no small cuts.  I have recently taken nails off due to being paranoid about their role in flares – small cuts returning but pain is only half of the first six months.
Overall Pain 8+/10.  Blacked out briefly/on verge of fainting in shower due to pain a few times.  No reprieve from pain.  Can’t even describe the totality of it. 7/10 when flaring but mainly sits around a 4-5/10
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8 thoughts on “Two Year Update

  1. Dear God woman, you have got to take something. Please trust me.

    I was on a month of anti-fungal medication and it really made all the difference, and started me healing. I am now on Ketokonazole topical, and it helps tremendously. There is no need for you to suffer like this. Please continue to share, getting it out helps. Sending you hugs and well wishes. Stay strong. And for God sake, please get to the doctor. Cuts sound like steroid induced rosacea as opposed to eczema.

    • Thank you for your well wishes, they’re appreciated. I want to encourage you to consider your words in future comments on tsw blogs with an approach that includes some sensitivity. Your comment here contains assumptions that could have been phrased as questions. Topical pharmaceutical anti-fungals have been of limited value to me and three pharmacists have advised against their ongoing use especially full body. I use lemongrass essential oil cyclically with tea tree oil everyday. None of these approaches have prevented flares but they do prevent infections negating my need to use antibiotics as I previously did.

  2. Hi there, My name is Laurie and I’ve been quietly reading your blog for quite some time. I’ve not commented before nor was I brave enough to start a blog last year when beginning this bogus journey. You are the only person I chose to follow for real, although of course I have spent countless days researching anyone’s story I could find. For some reason, you remind me of me! I am about 14 months into recovery and am doing fairly well. I got so excited when your email popped up this morning. And was so sad to hear of how you are getting on. I can’t recall, have you been tested for any gene mutations? Specifically the MTHFR. I ask because I found tremendous relief for my constant red and oozing face after identifying that and treating with methylated B vitamins. Because this mutation hinders my cells from properly detoxing themselves, I did a few Glutathione and immune boosting IV pushes which helped SO MUCH. Funny tho, after a few pushes I started to have cleansing reactions. I stopped those and at that same time wondered if maybe…even though I am supplying my body with all good things (a LOT of them) – vitamins, minerals, herbs…maybe because my body still has to process all of these, so hard on the liver/kidneys which are already so congested – its just too much. So…I stopped it all (except adrenal support). I was surprised at how much better I feel in general. So far, so good. My face is still pink occasionally (face and neck were the WORST through all this, just horrible and debilitating) and I am still getting flaking and some crazy itchiness that I try to breathe through…but not having the ooze, as you know, makes a world of difference. In addition, I found that through all of this poisoning – my hormones TANKED. And I couldn’t get myself out of that vicious cycle. I was 41 when this started and was told I had hormone levels of an 80 year old woman. Completely flat-lined. Not sure where/when the disruption happened but I was unable to cope on my own in anyway until I started taking estrogen and progesterone. I am told this will not be a permanent situation but just until my body, that was so horribly damaged by steroids, starts to regulate itself again – And its finally starting to happen. As each cycle comes and goes I am slightly better and better. I am sure this info is mostly redundant but in case ANY of it may help, I wanted to reach out. No one should have to live the life that we have experienced. I had suicidal thoughts that I have NEVER BEFORE HAD. I wouldn’t wish this on my worst enemy. Commenting here is a bit out of character for my introverted self but I’m finding my empathy soaring to levels I have never seen after going through this hell. Much love to you beautiful, strong woman. xo

    • Thank you Laurie.
      I tested negative for both the key MTHFR genes. I tried the B’s and glutathione last year anyway but recently stopped everything as you did. Now I only take wheatgrass, nettle and skullcap as teas.
      I have considered taking bio-identical progesterone – it was something I took after the birth of my second child going through tsw without knowing. Perhaps it contributed to my healing more than I realised!
      Glad you are coping better now. Thank you for commenting. Two days ago I almost deleted my blog!
      Love Ruby

  3. Hi Ruby
    I am a nee reader to your blog. Have you tried anything to sipport your adrenal glands. Herbs like liqourice root, ashwahanda and DHEA. I believe that weaning off steroid cream, you are left with sluggish adrenals. Maybe supporting them can help. I am just starting my own journey, of not using steroid creams I am experiencing prickly heat and very dry skin but no major flares as of yet. I truly believe that helping your own body produce cortisol can help the withdrawal symptoms. Also need to reduce any stress on your body e.g. mental or stimulants like coffee, sugar etc or allergens. It’s a truly awful condition, I hope you find some relief soon 🙂 meditation and yoga are helpful in stressfull conditions like ours. Im sure you already know some of this but thought i would drop a message incase anything can help you. Good luck x

    • Thanks Angie
      Yes I have been supporting the adrenal through diet. Lately I have started having sugar again in natural forms due to needing comfort but generally avoid stimulants. I find meditation very helpful if I am functioning ok but in the depths it doesn’t even cross my mind to practice it – I’m too busy trying to figure out how I am going to manage to get up for the toilet or put a bra on etc!! haha

  4. I know it can be discouraging as am 21 mths tsw and have had so many ups and downs.
    Am glad to see there are some improvements in your comparison timeline nevertheless. Hang in there! Glad you didn’t delete blog, I think these documentations are invaluable when the medical profession and research in this area is still lagging so far behind. This accumulated public evidence cannot go ignored indefinitely. Hopefully in the not to distant future there will be big strides made in this area and others wont need to suffer this bollocks x

    • Thanks Caroline. Yes we are the pioneers – I hope people won’t have to suffer through this as badly in the future xxx

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