Health Update – September 2013

20 Sep

I can barely believe it is this time already. Today I have my three month review appointment with my ME/CFS specialist. It doesn’t seem two minutes since my last appointment back in June. So I’m going to take a break from the psych analysis of myself that I’ve been posting about recently and today post a general health update instead.

If you missed my psych posts you can read them here, here and here. And if you’d like to read my previous health update, June 2013, you can read that here.

A lot has happened in the last three months, I went on holiday to France and I’ve moved back to the flat I share with Mr B in London. Diving straight into the health update:

Question 1: How are you feeling?

  • Okay. I’ve had my fair share of ups and downs in the last few months.
  • July – had a few really bad weeks after my last appointment. Dizziness and lower leg pain significantly worse. Began using compression stockings. Racing/pounding heart very noticeable, especially after getting out of bath, when lay down to rest, after shower.
  • France – my ME/CFS did not seem to like my two week family holiday. My dear friend behaved herself for the first few days (subject to the obligatory post travel fatigue and pain spike) but then all hell broke loose. I had a lot of joint and muscle pain, especially in the mornings, I had to take co-codomal for the pain and spent the mornings curled up on the sofa unable to do anything else. Not sure why. I really didn’t physically over do it whilst there. But perhaps the heat, change of location and routine and effects of travel had a greater effect than I expected.
  • Flight – if my ME/CFS didn’t like the holiday well it damn well hated flying. The dizziness and pressure I felt both in my head and bearing down on my upper body during take off and landing was just awful. I was in tears. My lower legs throbbed and my ankles really hurt. Somersaults inside my head is a good description. It felt like the contents of my head lifted up….and then flopped back down. Repeatedly.
  • Bad Cold – shortly after returning from France I came down with a bad cold. Fever, sore throats, streaming nose, headaches. The Works. Viral cold symptoms passed in about 5 days but took couple of weeks to get back to my pre-cold ME/CFS levels.
  • Living back in London – I’m doing okay. My myalgia pain is worse both in terms of intensity and duration. Fatigue is worse too but not to the same extent as the pain. But I’m doing okay. Managing my illness better being here this time around compared to the few months I tried living back here last year, when I went dramatically down hill. I am trying to be strict with my body’s limits, resting lots and relying on Mr B and our cleaner to do housework and as many of the necessities of life as possible. I’m calmer, more relaxed and letting things go more easily which I think is helping a lot.

Question 2: What symptoms are most persistent right now?

  • Myalgia pain – I’m suffering much more pain than my ‘usual’. This has been the case for the last couple of months. In particular my neck and shoulders hurt more acutely and hurt everyday. The pain also seems to be spreading down my back. I notice a tightness and achiness in my neck, shoulders and and shoulder blades when sitting at the desk and on the sofa for too long, during and after standing for a short while e.g. when washing a few dishes and also when walking. Recently when I went for my paced walk (20 minutes currently) it hurt to keep upright, my neck, shoulders and back ached so much. I’m taking additional co-codamol painkillers on top of my daily dose of Amitriptyline several times a week at present for the pain, whereas before it was much less frequent. I guess it is because I am doing a bit more as I am no longer living at my parents.
  • Fatigue – although not as increased as the myalgia pain, my daily level of fatigue is a bit higher than it was. I find myself falling asleep when I rest more often and I feel generally more tired.
  • Lower leg pain – my calves and ankles throb and feel heavy. It feels like there is a band around my ankles pulling tight, squeezing the pressure in my ankles. This is particularly bad first thing in the mornings and both during and especially after walking. Wearing compression stockings (especially for my daily walk) and keeping my feet elevated helps alleviate this.
  • Red/purple feet – without the stockings I notice my feet turn dark red, almost purple. I notice this most often when I get out of the shower (when I’ve been standing up).
  • Sore throats – I am getting a more severe sore throat and more often. Especially, though not only, when I’ve been chatting on the phone or with a friend. Also when I’m tired and/or stressed e.g. when we had a giant water leak last week.
  • Dizziness – on standing up from having been sat or laid down I feel dizzy. This lasts a few moments. It feels like a rush of pressure to my head and everything goes black for a few seconds. It feels like the insides of my head lift up…and then flop back down. I reach out to hold onto something to steady myself. The compression stockings seem to help with this a bit. It is worse when I’m not wearing them.
  • Sound sensitivity – I really struggle to concentrate on the conversation when there is background noise e.g. talking with Mr B over dinner with music on. I feel stressed by the noise and its distraction.
  • Hair loss – every time I brush or wash my hair literally a handful of hair comes out. I can’t decide if this an actual medical problem or whether it is simply the result of having long fairly fine hair. My hair is longer than it’s ever been and the hair loss is worse than ever so I’m unsure.

Question 3: What symptoms are least persistent right now?

  • IBS symptoms seem, touch wood, to be much more under control – hope I haven’t jinxed myself by saying that! The high soluble fibre diet without any trigger foods has really helped. I’m still getting some bloating, but it’s much less frequent. I’m seeing a pattern to it as well – skins of fruits and veggies and nuts if they’re not chopped real fine, make me bloat. You can read more about my digestive improvements here.
  • Headaches – although most days I’ve still got the dull pressure above my left eyebrow which has me reaching for the tiger balm to clear the fuggyness in my forehead, I can only recall two really bad migraines in the last few months – hurrah! This is really great and a big improvement. I’ve still had bad headaches, just last week two consecutive days I had persistent head pain that I had to take co-codomal for, but  far few fewer and less severe. Hurrah!
  • Night sweats – until last night I had not had them for the last couple of months – double hurrah! Nothing worse than waking up drenched in sweat and covered in goosebumps and shivering all at the same time. Not sure what went wrong last night…
  • Sleep – as good as ever with melatonin. Getting 8 hours most nights. Often wake up feeling fairly alert though doesn’t last very long, quickly feel the tired hit me. Some mornings still feel totally un-refreshed but better than was.
  • Brain fog – have some times when I forget what I was going to say and when reading/concentrating is like wading through treacle but better than it has been.
  • My mood – I feel calmer, less stressed. I think being apart from Mr B when I was living back at my parents took more of a toll on my happiness than I perhaps realized. Being back in our flat in London together is wonderful, and still two months in, feels like a novelty. I’ve had a few down moments and been teary but overall I am happy 🙂  and much more balanced in my mood.

Question 4: Have you added any medications, supplements, treatments or “food” medicines?

  • I’m taking Acidopholus probiotic daily and digestive enzymes and peppermint capsules on an as needed basis. I take the enzymes when I eat meat and the peppermint capsules whenever I eat something I think could trigger bloating – broccoli for example.
  • I’m still taking organic acacia senegal soluble fibre twice daily as my digestive regulator!

Question 5: Have you subtracted any medications, supplements, treatments or “food” medicines?

  • I had a food intolerance IGg blood screening done in July which highlighted a number of trigger foods which I have cut out: grapes, yeast, eggs, animal milk, almonds, brazils, kiwi, coconut, turkey, soya. You can read more about my elimination diet and food intolerances here.
  • I haven’t as yet reintroduced my monthly B-12 injections.

Question 6: What have you been able to do since the last time we talked?

  • Move back to London to live with Mr B in our flat. I’ve been here for roughly two months and I’m still standing! Yes some symptoms are worse but overall I have coped well I think.
  • Flew to France for a two week holiday which was wonderful – you can look at some holiday pics here! Yes the flights were pretty awful for me and my symptoms and the second week of the holiday I suffered with a flare in myalgia pain and fatigue, but it was all worth it for a lovely family holiday.
  • Had friends over and asserted myself and took rests during their visits so as not to over do it too much. Tho still suffered the next day.
  • Baked – my restricted diet has led me down the vegan baking path and I love it! I’ve made several things from Oh She Glows and Chocolate Covered Katie recently – these two blogs are great for healthy treats and I highly recommend you check them out be it if you’re gluten free, vegan, both or neither!

Question 7: What do you think you need to work on?

Question 8: What are the 4 best things in your life right now?

  • Mr B – he has been amazing since I’ve been back living in our flat. He does so much around the flat so that I don’t have to do it enabling me to be here – he must really want me to be here! He does things (mostly!) without moaning when I ask and is just generally being super supportive. I couldn’t be here without him. Thank you gorgeous 🙂
  • My friends – I have had been able to have a few of my closest friends visit and I’ve been struck by what good friends these girls are. They’ve stuck by me through the last few years, kept in touch and made the trek to visit me. They’ve understood when I’ve needed to have a break from our chattering to rest and just generally made me feel really loved. Thank you girls 🙂
  • I’m really looking forward to next week when my Mum, Dad and I are going to Sussex for a few days by the seaside. Hopefully the British rain clouds will hold off for a few short, paced (of course) bracing walks on the beach. Not living at my Mum and Dad’s now I’m really looking forward to seeing and spending some time with them 🙂
  • My digestive system is playing ball and behaving itself on my diet without any of my trigger foods, without any processed or refined foods and everything in blended, poached, mashed baby food form! Seriously hope I don’t jinx myself having said that! It makes such a difference to my overall health and happiness when my gut behaves!

So there we have it, how I’m doing as at September 20th 2013. Wish me luck for my consultation and I’ll be sure to let you all know how it goes.

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22 Responses to “Health Update – September 2013”

  1. dawnhosking September 20, 2013 at 8:46 am #

    It’s interesting to note that you get the purple colour to your feet – I get the same and on the tips of my fingers too! This is a great post, I can relate to lots here and in particular the pacing – my goal posts have moved and I am having to learn to pace to different limitations and my relapses take longer to recover from too x

    • myjourneythrume September 20, 2013 at 9:52 am #

      Glad you enjoyed my post. I’ve been told that my purple feet is because of blood pooling due to POTS I think the same thing can cause purple fingers. X

      • dawnhosking September 20, 2013 at 10:15 am #

        Ah, yes. I do get that randomly and it is rather frightening when it happens. x

  2. currankentucky September 20, 2013 at 9:29 am #

    Best of lucky today!!! xx

  3. Kristina Schwende September 20, 2013 at 9:36 am #

    NLP and a timer – two things I must implement! I’m sorry to hear you have been having such bad pain. It sounds like you are managing it well though. I need to learn better coping strategies.

    • myjourneythrume September 20, 2013 at 9:54 am #

      It’s all about doing as much as poss to manage and cope and if all else fails sofa time and more painkillers are my fall back option! Tho I try to take as few painkillers as poss but sometimes there’s just no other choice.

  4. Diana - Chronic Chic September 20, 2013 at 1:03 pm #

    I love how organized this update is. 🙂

    Did the compression stockings help at all?

    Good luck on your consultation!

    • myjourneythrume September 21, 2013 at 6:17 pm #

      Thanks! The stockings help enormously both for pain and dizziness.

      • BONNIE JOHNSON September 21, 2013 at 7:32 pm #

        P.S. BATHS R EVEN WORSE AS U R ”SITTING”IN THE ATER!

      • myjourneythrume September 21, 2013 at 7:36 pm #

        Yes I can see that!

  5. Katarina September 20, 2013 at 5:25 pm #

    I think it’s really great that you have a very clear birds’ eye view of your symptom ‘horizon’. I have really slacked in keeping up a health/pain journal over the past few months. Is that what you do to remember what/when/how your condition evolves? Also, your positive outlook is really inspiring! Recently I concluded that I can more or less handle the bodily symptoms but it’s the contentedness and happiness that really matter most to me – feeling emotionally down is so much worse in my view than back pain, or whatever my body is doing at the moment. My partner and I are going to get a lot more serious about stress management. Eating well, sleeping more, meditating regularly and calm exercise (yoga for him and tai chi for me because I can’t do seated yoga poses). Hope your appointment goes well! p.s. I get very strange foot colour changes but they go along with temperature – my doctor suspects Reynaud’s.

    • BONNIE JOHNSON September 20, 2013 at 8:41 pm #

      KATARINA–I TOO FIND THE MENTAL LOWS VERY HARD TO DEAL WITH–I FIND MYSELF UNABLE TO DO ANYTHING–JUST LIE IN BED ALL DAY FEELING I JUST CAN’T TAKE THIS ANOTHER DAY & HOPING THINGS IMPROVE SOON!
      WOW, JESS, YOU ARE SO BLESSED TO HAVE SUCH A GOOD SENSE OF HUMOR & POSITIVE ATTITUDE–I DON’T KNOW HOW YOU’D EVER MANAGE SO WELL, OTHERWISE! I ADMIRE YOU SO MUCH!
      I ALSO HAVE TROUBLE WITH SHOWERS; I USED TO BE TOTALLY EXHAUSTED TO THE POINT I’D HAVE TO SIT FOR SOMETIME OR EVEN GO TO MY BED BEFORE I’D BE ABLE TO DRY MYSELF. CHLORINE IS VERY BAD FOR US! I USE A FILTER FOR THAT IN THE SHOWER. I OFTEN STILL FEEL WEAK BUT NOTHING LIKE IT WAS BEFORE.
      GOOD LUCK WITH THE DOC! WE DON’T HAVE ANY ”SPECIALISTS” NEAR-BY! BJ,

      • myjourneythrume September 21, 2013 at 6:35 pm #

        Thank you 🙂 I’m not always positive, I have had some very down dark times, like we all have, but somehow, and I never know how, I pull myself through. Interesting about the chlorine, I’ll investigate that, showers ( and even baths sometimes) are very tiring.

    • myjourneythrume September 21, 2013 at 6:21 pm #

      Thanks! Yeh I do keep a symptom journal but not in any strict way. I just note down the odd thing when something is noticeably better or worse. I totally agree staying positive and happy is really hard but I find it helps me feel so much better overall when I am. I’ve had my fair share of down and really down times. Somehow I pull myself through, no idea how!

  6. E. Milo September 21, 2013 at 5:09 pm #

    I am also amazed by the thoroughness of this update and your memory! My headaches are so normal, I forget they’re a symptom. Ditto for my bowel issues. Did your doctor give you this questionnaire? How long does he/she spend with you? I feel like we never get anywhere because my Good Doc only has half an hour, max. She would never read something like this! We are so similar. Many of these updates could be mine- except the 20 minute walk. Amazing! Good for you. X

    • myjourneythrume September 21, 2013 at 6:43 pm #

      Thank you 🙂 my appointments are scheduled to be an hour but they often run over, yesterday it was nearly an hour and a half. I am very lucky to have such a good specialist. I have my GP to thank for that! he searched for me and finally rang one of the big ME charities here and spoke to their medical director for a recommendation. The questions came from Jackie over at Lethargic Smiles, though I’ve altered them a bit. I keep a journal, just jotting things down, nothing done religiously, which ensures I remember! I streamlined this post into a couple of sides of key points for me to use as a crib sheet in the consultation so I don’t forget anything I need to discuss. Hope you’re having a fab weekend. X

    • BONNIE JOHNSON September 21, 2013 at 7:29 pm #

      I get about 10 minutes with the Doc.. Keep in mind that chlorine was a poisonous gas used in the war to kill people! It’s not good for us, as our bodies r so sensitive. 1st thing I did 10 yrs ago is start drinking filtered water & same for showers/baths. Some times our water is so strong here, the smell of chlorine is very noticeable–especially during spring run-off.

      • myjourneythrume September 21, 2013 at 7:35 pm #

        I only drink filtered water, London tap water is not something you want to swallow! I see my Doc privately, and he ain’t cheap (and my insurance no longer covers him, don’t get me started on that!) but worth every penny to get help, time, understanding and advice. I wish you could get access to similar.

      • BONNIE JOHNSON September 21, 2013 at 8:20 pm #

        YES, ME TOO BUT I DO HATE APPOINTMENTS & HAVE FOUND I KNOW MORE THAN MOST. SINCE I REALLY DON’T HAVE THE ENERGY–OR MONEY–TO LOOK AFTER MYSELF, I’VE ALWAYS WISHED I COULD JUST SPEND TIME IN A CLINIC GETTING FED GOOD MEALS & HAVING ANY TREATMENT THEY MAY FEEL HELPFUL. I DO KNOW ENGLAND IS WAY MORE ADVANCED RE CFS THAN HERE IN CANADA!
        IF YOU CAN’T DRINK LONDON WATER, THAN NOT GOOD FOR BATHING EITHER. OUR SKIN IS LIKE A SPONGE WHEN IT COMES TO WHAT WE PUT ON IT. ONE OF THE BENEFITS OF PURE ESSNTIAL OILS–THEY GO STRAIGHT TO OUR CELLS, THUS WORK VERY QUICKLY. BLESSINGS, BJ.

      • myjourneythrume October 3, 2013 at 8:32 am #

        Yes a relaxing retreat sort of clinic that offers all sorts of lovely treatments and respite from our usual struggles would be wonderful. Maybe that’s what I’ll do in my next life. I always put a couple of drops of essential oils in my bath, it’s so soothing that way.

Trackbacks/Pingbacks

  1. A What Disorder?! | my journey thru M.E. - October 17, 2013

    […] in my enforced rest and hibernation, I haven’t managed to get round to writing up how my review appointment went with my consultant when I saw him on September 20th. Better late than never, so here it […]

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