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Convinced I have CFS - A little offload post (help!)

Posted , 8 users are following.

Seventh
Seventh

Hi all. Firstly apologies if I ramble, I find it hard to stay on track sometimes but will try here. I've been reading a lot of the posts on this website and I've found your discussions very helpful. I'm trying not to mention things too much at home but need to offload, please feel free to do the same and maybe we can help each other.

As the topic says I'm sure something is "up" with me and I'm 99% sure it is CFS. As of right now I have been off work for almost a year with GAD, depression, and agoraphobia. Around October when I'd finally accepted how I was I noticed how I was feeling a lot more. I'd stayed with a friend to help her as she had a slipped disc; I cleaned and tidied during the day and got her food. After a week of this it wasn't long before I myself was finding it hard to get dressed, get off the sofa and generally function. I put it down to the medication I was on, Sertraline, and didn't think much of it.

It was only as days/weeks went by and my friend saw how I was during the day that she said she thought I might have fibromyalgia. I laughed it off as she's mentioned it before and as she has fibro I figured the chances of us both having it were slim, plus I was sure I didn't have the same kind of pains as she did. Again, I put it down to the Sertraline and me doing more in the day than usual whilst I was helping her.

Fast forward a bit and around February I changed my medication to Venlafaxine which helped the GAD a lot. I'm still noticed that I was very tired most of the time but as I'd been off work for about 8 months I figured that was me getting used to having the days to myself and enjoying "me time". I ignored the headaches and struggles with words and memory as I thought it was either me getting used to the Venlafaxine or my brain relaxing from finally not worrying about work (I'm a PA to a very busy director and organising is my life, switching off my brain was a focus of most of my psychologist and psychiatrist sessions).

It's somewhere around this time that I have my first outing. I was really agoraphobic at this time and always needed a trusted body with me wherever I go to feel comfortable enough to leave the house. We commuted to London to see family for the day, stay over, and then head home. It's a short train and tube ride, a bit taxing for me as it involved travelling the route I usually go to work but with my other half I pushed through my anxiety and we made it there and back.

The next day (it might have been longer) I was FLOORED. I woke up feeling like I had a cold, could just about get it together to leave the bed (not staying in bed is a big deal for me as it usually is the start of me slipping further into depression, so I will always try to leave my room). Barely made it to the sofa, I felt like a zombie; my limbs were like deadweights and I don't remember what I did that day or if I even ate.

This has happened each time I've been out, I think the longest it's taken for me to feel "normal" again was five days after an outing. I started taking my symptoms more seriously and realised I haven't had a normal day in what seems like forever. Even on good days I'm tired after making dinner (I have just eaten cereal if many days as I don't have the energy to cook), I get headaches frequently and am always forgetting words. People can talk to me, I'll hear what they're saying and as soon as they finish I have to ask them to repeat what they said. Sometimes I can't even lift a glass of water to my face because it's too heavy and I'm sure this can't all be down to my medication.

So I've spoken to my doctor, had a few blood tests and because I'm lucky enough to have medical cover through work I've asked her to refer me to a specialist who I'll be seeing at the end of the month. I'm really anxious about the appointment and I just want to be taken seriously. Do you think there's anything I should do or mention that can help?

Thank you for reading my long post and helping me from exploding at my nearest and dearest!

1 like, 9 replies

9 Replies

  • Beverley_01
    Beverley_01 Seventh

    Posted

    Hi seventh,

    Sorry to hear you are suffering so much right now. I get floored with the travel too. Its such a pain. The whole cfs/me route seems to be blood tests all coming back normal first to out rule everything else. Not sure which specialist you are going to be seeing? Also, were you on medication for depression, anxiety, agoraphobia before the sertraline? Just asking as some meds can affect really badly.

    Write a diary for at least a week to show how things are for you. Also, write down your symptoms, how long you've had them and any fluctuations. Make sure you take someone with you so they can listen for you or prompt etc. It really helps.

    Hope that helps

    Beverley

  • Elmo69
    Elmo69 Seventh

    Posted

    Your story definitely strikes a chord with me! It is highly likely that you could have CFS/ME - at your appt just tell them what you have just written!

    There are several other conditions that are generally able to be ruled out by blood tests and the diagnosis is made through a process of elimination.

    I have experienced many years of depression and when I started having increased symptoms of fatigue, headaches, dizziness, anxiety, random muscle spasms and pain, word-finding difficulty and mood changes over the past 4-5yrs I initially kept thinking it was due to stress causing worse depression. Each year for the past four years I ended up having a couple of months off work due to extreme fatigue and stress and last year was extremely bad and I literally was "wiped out" for two weeks whereby I could only just manage to drag myself from bed to sofa, as you described was your experience. At that point I knew there was much more going on and asked my GP about possibility of CFS/ME and luckily got referred to specialist service.

    I found the "Action for ME" website really useful while I was awaiting assessment. I have found "pacing" quite effective too and now have an activity management plan to work through and am waiting to gave CBT.

    It was very difficult to get my head around the diagnosis at first but I am starting to get there and learning to be kind to myself.

    I remember how confused, frustrated and scared I felt awaiting my assessment appt, still feel those things a lot now but they are getting less.

    This forum has been such a support and it is very helpful reading of others experiences and what has or hasn't t helped.

    You will continue to feel mixed emotions but try to just be kind to yourself. Do small amounts of activity, even if it is just getting up each day and having at least a minute standing up/walking around the room every hour or so and try and maintain some brain activity but vary it with relaxation.

    Keep sharing any worries with the forum and/or feel free to PM me.

    Sending you very best wishes. :-)

  • Seventh
    Seventh

    Posted

    Thanks for your replies and advice, so quickly too!

    Beverley-01 I'm seeing a CFS specialist as my friend convinced me to outright ask to see them, again I'm so lucky for the health cover I have. Yes the travel is so tough, sorry to hear it's difficult with you too. I wasn't on any medication before Sertraline so I could only think of that being the major change for me, I feel much better off of it now smile Diary is a great idea, I'm going to start right away. I'll try to note everything down when it happens so I don't forget and see who can go with me, thanks so much.

    Elmo69 good plan, I might show them this post! Wow your situation sounds so similar too, I'm sorry it took so long but glad it was found out in the end. When you have anxiety you can definitely tell if you're needing to take time off for other reasons, it must've been hard to take time to recover and then have it happen again for so long. I'll definitely check out that site and thanks for your kind words. I'm still being careful saying "fatigue" for now until I get a diagnosis but the advice you've given sounds good. It's so hard to tell when I've pushed myself too far and sometimes it's hard not to think that I'm just being lazy, but reading that other people go through the same thing really helps.

    Thank you to everyone for being my sounding board smile

    • Beverley_01
      Beverley_01 Seventh

      Posted

      Hi seventh,

      Hope the appointment is useful. Good luck and let us all know ho how it goes.

      Beverley

  • elaine62759
    elaine62759 Seventh

    Posted

    It does sound like there is a very strong possibly that you could have CFS. They usually do a lot of blood tests and some physical tests to rule out other conditions first. My main symptoms are extreme fatigue after doing physical and mental activites, pain in my joints and muscles and brain fog. I often feel so tired it is like like the exhaustion you have if you've got flu, my muscles feel really heavy and sore as if I have weights tied round them and things like picking up a cup can feel like lifting a brick when I'm bad. Get confused easily, find it hard to follow coversations, mind goes blank, etc. I had CBT as a therapy and actually realised that some of my other symptoms weren't caused by the CFS but my anxiety. If you are anxious it makes you breath into the top of you chest rather than your stomach which alters the oxygen levels in your body. This can lead to you feeling lightheaded, confused and panicky and also give you headaches. I now do a simple breathing exercise if I am anxious. Put one hand on the very top of your chest just under your collar bone and one hand on your belly. If the hand on your collar bone is moving much more than the one on your belly your are overbreathing. You should aim to slow your breathe down and breath into your belly so this hand is moving and not the one further up. Not sure if this will make sense to you! Relaxation CDs are also great for anxiety. I would suggest you write down everything you do in a day and you how feel afterwards physically and mentally and take this to your appointment with you as it is very likely your mind will go blank when you get there. Good luck with your appointment.
    • Jk1952
      Jk1952 elaine62759

      Posted

      Good advice Elaine. I was trying to devise answer to Seventh but struggling to put it into words. I'm trying to pick up from set back at the moment and I'm doing it the way you've just described because this is what works for me too.
    • elaine62759
      elaine62759 Jk1952

      Posted

      I definitely think that good quality rest and relaxation help you recover from a set back more quickly.  I have a collection of relaxation CDs which I swap about so I don't get bored with them and always feel like I have a bit more energy after listening to one. Another simple relaxation technique I found a couple of weeks ago is to sit or lie down and on your in breath think 'I am' and on your out breath think 'relaxed'. Try and make you out breath slightly longer than your in breath. Also notice how your body feels and if any parts feel particularly tense ( I tend to hold a lot of tension in my jaw and shoulders) and try and relax the muscles and let the tension go. This is really easy to do and you can do it anywhere and anytime. I also find gentle yoga breathing and streches helpful. My problem is once I have a bit energy I tend to do too much and relapse again so have to get better at pacing myself. Hope you recover from your set back soon. 
    • Seventh
      Seventh elaine62759

      Posted

      Thanks very much for that, Elaine! Lots of useful things right there, I hadn't really thought about some of the symptoms overlapping with anxiety effects but reading it just makes so much sense.

      Jackie, from what I can tell the doctor seems to be specialised in CFS and hormone/thyroid conditions. I'm totally resting today after pushing it a bit at the weekend, head feels like it's in a vice! Will definitely try to distress with some of the above advice including getting off my phone.

  • jackie00198
    jackie00198 Seventh

    Posted

    Boy, that's a lot of stuff to sort out. To get some really good information on ME/CFS, including symptoms, Google "solve me/cfs initiative." What kind of specialist are you seeing? For ME/CFS, the appropriate specialists are an infectious disease doctor or a rheumatologist. For fibromyalgia, there are specific trigger points in the body that an informed doctor can identify to see if you have that illness. In the meantime, rest and don't push yourself, and de-stress in whatever way you can. I've found meditation to be helpful. 
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