9 weeks post VM

[LJSummer]

Hi everyone, I'm currently 9 weeks post VM and struggling a bit. Before I was diagnosed with VM I had never heard of it, but found that both the Doctor in hospital and the GP didn't give me much information about causes, effects and what will happen later on.

I've been back at work on phased return for 3 weeks, again because I didn't get much information and didn't really know what to do so felt I could probably do it, however I've been told by occupational health this is probably too soon. Now I'm back though I'd rather not go off again.

Because I was a very active, motivated person I am really struggling with the fatigue, particularly in the mornings as I'm not able to get out of bed until earliest 9.30am. Then I have the issues of standing up and feeling as though I will faint (this happened 8 weeks ago in hospital and I cut my forehead open), where my vision goes black for around 10-30 seconds. This happens every time I stand up for about 3 or 4 hours then seems to get a little better. I never had this before VM, I've asked the GP but they maintain there's nothing I can do because it's down to having low blood pressure.

The recurrent headaches seem to be happening about twice a day, again I don't know if this is normal or to be expected, but from reading some posts it seems as though they will potentially carry on for a while.

I guess my reason for posting is to see if anyone else had similar issues and whether or not they got through them, as this really feels never ending. I'm also panicking about it coming back because it was a pretty traumatic experience, so I'm worrying about every headache or ache 🙈

[Lynnemac]

Hi, I think the medical profession need more information about VM. It’s all about rest and recuperation for you. Personally I was off fir 4 months earlier this year then a phased return. I do think you are being too hard on yourself and if you need to take more time off I would. It’s a very debilitating condition and if you rest initially and let your body heal you will recover fully quicker.

Be well & kind to yourself 😊

[LJSummer in reply to Lynnemac]

Thank you, I'm trying to be kind to myself but find it very difficult. I'm definitely a 'get-on-with-it' type of person but I've really had to alter my mindset with this.

I think you're right, there doesn't seem to be a lot of knowledge about this in the medical profession, or if there is we don't seem to hear about it!

Thank you for the kind words 😊

[Starry]

Big hugs, a lot if this resonates with my own experience in particular the lack of information from the hospital. I do think they underestimate the illness. I was told Id be fine in 2 weeks

I was off 5 months and still collapsed 4 weeks into my first attempted phased rtw.

If there is no financial pressure to go back i would take OH advice and stay off as ling as possible. Viral meningitis is a known trigger for ME/CFS so it is important to allow enough time tfor your brain to heal and body to recover and rebuild stamina. All your reserves will be gone fighting the illness.

I didnt take the time, pushed too hard on rtw 2 had a big relapse and have now been diagnosed with ME. Health comes first.

I have perpetual mild dizziness (causing severall falls/ minor accidents) and get breathless on standing though not to the point of fainting. I sometimes get palpitations. It may be worth asking for a referral to be checked by a cardiologist for POTS. There is a fb group and nhs page and 2 good websites for it. Go armed to your gp with symptoms list and don't take no. Xx

Ive not had headaches often, except permanently for a fortnight when i relapsed but the rest of the time i get a horrid sense of pressure in the back of my skull.

Hope some of this helps. Do give yourself the time you need to recover and be patient with your body. You've been through a lot. xxx.

[LJSummer in reply to Starry]

Thanks, that's helpful to know. I was worried about CFS as a result of this as the fatigue just doesn't shift, although I am only now 10 weeks post VM so think I may be expecting too much!

That sounds very similar to some of the post-diagnosis symptoms I'm having. My work are very supportive which I'm finding really helpful, so hopefully they'll understand. I just find if people haven't had this it's hard to explain what's happening and for them to really get it, but I suppose that applies to most things!

Thank you for your suggestions, it's really helpful to hear from people who have also experienced this and I wish you all the best xxx

[Starry in reply to LJSummer]

You too xxx

[mcben]

I wonder if there are some herbs that would help with the blood pressure thing. Finding a good chinese medicine person or herbalist might be great. I also thought of this thing called Polarity Therapy for you. Its like craniosacral but its dealing with the negative and positive ions in our energy field. Can kind of put you ride side up if you're upside down. Having some craniosacral therapy might also be good since you hit your head, and would also help release some of the trauma from your system. Maybe doing some research about how to help with low blood pressure, if that means walking more, or something? Maybe having a routine where you wake up and just lay in bed and do some gentle movement to get blood flowing before you sit up, deep breathing, lifting legs up in air to bring blood back to heart, circling in your joints rolling to each side, maybe going on your hands and knees and doing some cat cow from yoga, then sit up and do the same until you feel stable, then standing...? basically reteach your body how to go from lying down to standing while keeping blood pumping... Like building a new muscle

[LJSummer in reply to mcben]

Thanks, I'll look into the Polarity therapy and also the craniosacral therapy. I'm trying a few different vitamins and minerals, I've read that co-enzyme Q10 can help with energy levels and fatigue so I'm giving that a go.

I'm hoping the blood pressure will go back to normal soon, it was low anyway as I was very fit and healthy. I'm trying to be as active as possible but it's so difficult with the fatigue setting in almost immediately, it's especially bad after any exercise (currently just walking). I'll try doing some stretches etc whilst in bed in the mornings that's a good idea, thank you 😊

Hoping this is all temporary but every suggestion is worth testing!