First came IBS, then came ME/CFS, and now POTS joins the party!

27 Jun
Is your heart racing? Photo credit: Morgue Files User Imelenchon.

Is your heart racing? Photo credit: Morgue Files User Imelenchon.

As mentioned in my health update post I have just seen my ME/CFS neurologist for my regular check up appointment. I see him every 3 months. It is always good to see him, even though often not an insignificant portion of the consultation is spent him telling me about his latest travels and sailing excursions…it serves as a distraction from my situation if nothing else!

Aside from his exotic tales, each consultation involves me telling him how I’m doing; which ME/CFS symptoms are worse, which are better, how pacing is going, reviewing my latest bloods, etc etc. I often have a collection of random questions to ask, often (in his words) weird and wacky solutions I’ve found via the internet that I want his take on, most of which he usually dismisses (infra red saunas), some of which he agrees with (D-Ribose supplementation). He examines me – my reactions, trigger point sensitivities, myalgia levels, chest pain, degree of redness of my throat (there’s a medical term for this which right now I can’t remember so we’ll stick with ‘redness’), swollen glands, eyes, takes blood pressure, heart rate amongst other things. All pretty standard stuff.

My latest appointment was no different, we’d done the holiday plans and how I was doing. It was all going swimmingly until I mentioned how dizzy and lightheaded I had been in the last few months.  I’d originally noticed this on getting out of bed in the mornings. I’d get straight up and walk to my bedroom window to open my curtains. By the time I’d get to the window, I’d have to grab hold of the ledge as I felt as if my body was swaying and that I would fall over any second. It’s hard to describe the dizzy sensation in my head. Everything would blur and scramble. I felt as if there was some pressure in my head trying to get out, whilst at the same time I felt really lightheaded, as if my head would lift off my neck. See I told you it was hard to describe. Now you’re probably thinking I’m crazy.

You might also be thinking, well that doesn’t sound normal, why hadn’t she got that checked out sooner. Well with ME/CFS, symptoms fluctuate and vary. If I raised the alarm every single time my body did something slightly different or bizarre, I’d be permanently at the doctors. I’m anything but a hypochondriac. I worry about wasting doctors’ time with my issues, when the answer is usually, it’s just the ME/CFS. This is one reason why I spent the best of 18 months worrying about a pain in my left breast and repeatedly checking my breast for lumps and prodding where the pain seemed to come from until I finally got up the courage to mention it to my GP who examined me and promptly sent me off to the local NHS breast unit. All turned out to be benign and although I was none the wiser as to the cause of the pain, I’m now reassured that it’s nothing scary and I am no longer prodding and manically checking my breasts and causing myself huge stress and exacerbating my ME/CFS symptoms and the breast pain.

Breast tangent aside, I’m not particularly good at bringing issues to my doctors’ attention.

Back to the ME/CFS specialist appointment and my dizziness. I’d made the connection between the dizziness and me transitioning from lying to standing but not thought any more of it. I’d noticed the same sensations on standing up from having been sat down for a short while and also on bending over to pick something up off the floor. Yes I’d noticed all that but just assumed it was another weird random symptom of ME/CFS.

Not too sure why I’ve written about the dizziness in the past tense given it’s still happening but anyway, English grammar aside, you get my point.

On me mentioning all of this my specialist had me lay down on the couch and he took my blood pressure. I’ve always had low blood pressure and this occasion was no different. Can’t remember the actual figures, suffice it to say it was low. He then had me stand up quickly. We played this game for a little while. Lie down for a few minutes and then he’d grab my arm and haul me up to a standing position. On standing my already low blood pressure plummeted even further. Interesting… Do you get a racing heart, my specialist asked? Yes! I replied I do. Again, I’d never tied that to the dizziness either.

Comfortably sat down again at his desk, my specialist declared ‘I think you have POTS‘. Postural orthostatic tachycardia syndrome to give it its full name. Yes, quite a mouthful and total medical jargon that has little meaning in every day life, to me at least. I’m still trying to get my head around what POTS is and how it relates to my low blood pressure. My specialist wants me to increase my daily saline intake (lots of water with salt dissolved in it) and take a low dose mild steroid (fludrocortisone I think, waiting for his letter to confirm this as by this point in the consultation my brain fog and tiredness had spiked and I didn’t think to write it down…) for a couple of months in the hope that this will settle the symptoms. If not he said he’ll send me to a POTS specialist for further tests and a full treatment plan.

I think that’s enough chat about my hospital appointment for one day. I’ll continue the story of the little party my body seems to be having with IBS, ME/CFS and now potentially POTS too, in my next post. By then I’ll hopefully have figured out what POTS actually entails for me….stay tuned to find out more!

Do you have POTS and/or ME/CFS? Has a doctor ever thought POTS may be causing the ME/CFS, or vice versa? If you have any POTS and ME/CFS related advice let me know. The head of this little sufferer, of IBS, ME/CFS and now probably POTS too, is about to explode with all these medical acronyms so any advice is happily received 🙂


27 Responses to “First came IBS, then came ME/CFS, and now POTS joins the party!”

  1. Lou Burkett June 27, 2013 at 11:05 am #

    Hi Jess, yes nearly identical situation my daughter is in with ME and now POTS. Your specialist sounds great. Can I ask where he is? D is entering adult services n we need new consult
    Many thanks for blog, I’ll follow you on twitter if you want to DM
    Lou x

    • myjourneythrume June 27, 2013 at 6:24 pm #

      Hi Lou,
      Thanks so much for visiting my blog and for commenting. I am so sorry to hear that your daughter is ill. My specialist is a neurologist in Essex and is really great though I’m not sure if he’s taking on new patients, at least not nhs anyway. We found him by my GP phoning the ME Association and talking to the medical advisor Dr Charles Shepherd, so that might be a way to find someone. I’m so grateful we found him. Yes definitely to DM, send me a message and I’ll reply 🙂 Jx

  2. fairywonderdust June 27, 2013 at 11:41 am #

    I have never been diagnosed with POTS but I used to have exactly the same thing happen to me. I knew I had orthostatic intolerance from my inability to sit up, but I was also getting very dizzy for a long time. I just put it down to the ME. I havent had any dizziness for a few months now. Its interesting that you say you have been told to increase your salt intake because a year ago my sodium level was bordering on too low and I started having salt in my meals and havent ever stopped that (salt is so addictive). So now I am wondering if raising my salt intake has stopped the dizziness. It stands to reason as dizziness is a symptom of low blood pressure and salt raises it. I do notice that gluten causes OI but I havent omitted it strictly enough for that to be my cure.

    • myjourneythrume June 27, 2013 at 6:19 pm #

      I’ve noticed OI and racing heart after eating carbs and dark chocolate (the closest I get to a refined sweet treat) and thinking back to when I did eat gluten, you’re right that gave me it too. OI is very common in ME, as far as I understand it the crossover to POTS is only made when there’s the racing heart (tachycardia) as well. Glad to hear your dizziness has eased, it’s a pretty horrible symptom. I’ll keep taking the salt, hopefully that will help me too.

      • fairywonderdust June 28, 2013 at 1:40 am #

        I dont think I had the racing heart. I do sometimes wake up with a racing heart but Ive put that down to anxiety. I hope the salt helps.

      • myjourneythrume June 28, 2013 at 1:42 pm #

        Thanks, I hope so too. I think racing heart can be attributed to lots of things.

  3. thehomeschoolingdoctor June 27, 2013 at 1:49 pm #

    Reading your blog is quite interesting. You describe similar symptoms as I was having, but mine were on a much, much more minor scale (night hot flashes, head symptoms, palpitations, achiness, and a few others). I’m thinking I am quite happy I intervened when I did. I don’t know what aspect of what did it–whole foods introduction, processed food withdrawal, food intolerance identification, probiotics, supplements– but that stuff is mostly all gone. I don’t understand all of this! No matter what, good luck in it all!

    • myjourneythrume June 27, 2013 at 6:13 pm #

      Thanks! And well done you for realizing your need and intervening when you did. You were suffering from burnout I guess? I ignored so many symptoms for a long time and didn’t ‘listen to my body’ (a message that has been well drummed in to me by now) and it all literally ended in tears – walking to the bus stop going to work at 7am with the beginnings of a horrendous flu virus, tears and sweat pouring off me despite it being December, snowy and sub zero – when finally I realized I have to stop now, my legs physically can’t carry me any further, I could feel my knees starting to buckle, so I went home. That was December 2010, I haven’t worked properly since. I have often wondered where’d I be now, if I’d stopped sooner….best not to go there!

      • thehomeschoolingdoctor June 27, 2013 at 10:15 pm #

        I am sorry, and I can’t wait for you to find something that helps you feel “normal” again! Keep posting!

      • myjourneythrume June 28, 2013 at 1:56 pm #

        Thanks 🙂 I will, it’s great (and free!) therapy!!

  4. triciaruth June 27, 2013 at 3:46 pm #

    A big fat ‘Booooo’ to that. But I want to hug your consultant – he sounds like a gem.
    I had that very same conversation about ME/not-ME symptom filter when I was at my GP the other day (diagnosed with a fungal skin infection, so not-ME). It’s a tricky line to navigate.

    • myjourneythrume June 27, 2013 at 6:07 pm #

      He is indeed a gem. I have been very lucky with my doctors. Sorry to hear about the skin infection, that doesn’t sound very fun! The ME/not-ME line is indeed very tricky tho I’m not sure my head in sand ostrich approach is a particularly good way to deal with it!

  5. Jackie June 27, 2013 at 11:02 pm #

    I’m so happy your doctor knew to have you lay down then stand up while measuring your blood pressure and pulse.

    I’m sure there’s more to your situation than I know, but I just want to say to be careful with the steroids. Most people with POTS already have really high stress hormone levels and steroids make this problem worse. I’m on a week of them right now for swollen lymph nodes that were so bad I couldn’t wear anything except very baggy clothing. The steroids make my tachycardia way worse and give me palpitations — I can’t wait until I’m done with them for the week.

    When you say he’s prescribing them to calm down symptoms, do you mean CFS symptoms or POTS symptoms?

    • myjourneythrume June 28, 2013 at 2:06 pm #

      That’s a really interesting point about the steroids and stress hormones. It is common to have high stress hormone levels in ME too, and I know I do. I will watch my body carefully over the next few weeks to see if/how my body reacts. I think they were prescribed to try and raise my blood pressure. I’m only taking 0.05mg so a pretty tiny dose so hopefully low enough to avoid side effects but not so low it won’t help the BP…

      Poor you with your swollen lymph nodes, that can be so painful. Hope the steroids are helping and not making things too much worse in the process.

      • Jackie June 29, 2013 at 1:26 am #

        You’re right on that being a tiny dose! I hope they help. Keep us updated. 😊 For me, Midodrine has done wonders for my blood pressure.

  6. starrystez June 27, 2013 at 11:34 pm #

    I have M.E and POTS. The POTS is definitely part of M.E and started secondary to it. Now I have ongoing cardiac issues as part and parcel of everything else. It’s very common to have both conditions and I feel they are often part of the same thing.

    • myjourneythrume June 28, 2013 at 1:43 pm #

      I totally agree, they’re both wrapped up in each other and interconnected, or so I’m learning anyway!

  7. Chronic Pain Heroes July 2, 2013 at 8:02 am #

    As I read your description of POTS, I found myself saying “I’ve had that, and that, yup that too!”. I’m also impressed that you have doctors that specialize in this stuff. I am having a hard enough timefinding a chronic pain specialist, never mind ME/CFS. I did travel to a fibromyalgia clinic a few months ago. The doctor checked my pulse lying down then standing up. He was shocked at how much it dropped (10 beats per… something). I will bring POTS up with my new GP. Maybe he knows of a specialist. Thank you for posting this story. I am learning so much from your blog and this is only the second post I’ve read!

    • myjourneythrume July 2, 2013 at 12:12 pm #

      Thank you for your lovely comment. I’m glad my blog is helping you. That’s what it’s here for, to help others in the same position as me. Are you in the UK? If so, check out this link, it has a list of POTS specialists. We found my ME/CFS specialist by my GP contacting the ME Association and speaking to the medical director. I’ve been very lucky with my doctors. I’ll definitely check out your site. Look forward to following your story.

      • Chronic Pain Heroes July 2, 2013 at 7:35 pm #

        I live in British Columbia, Canada. I contactedthe ME/CFS Association and was given two names. I traveled 5 hours by bus to see this specialist. While he certainly understood what I was dealing with, the stress and strain pushed me so far beyond that I developed new and more severe pain. I have done the doctor chasing thing before. All it did was make my pain worse. I vowed I wouldn’t do the same thing, but when my fatigue began getting worse again… Well, I’m sure you know the drill.
        Take good care. I look forward to reading more of your posts :0)

      • myjourneythrume July 5, 2013 at 4:36 pm #

        I know the drill all too well. I’m always wondering what I should do next to try and get better, will it help, will it make it worse…such a balancing act. On a non-health related point – BC is a beautiful part of the world. I was lucky enough to visit before I got sick, Vancouver, Horse Shoe Bay, Whistler, and in between, was just gorgeous. Would love to live in there!


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