To Anyone with ME/CFS who has had Shingles

Sparklefizz

Thank you everyone for your support.

Yesterday I finished the 35 doses of antivirals, and have discovered that the 7-day raging headache must have been a side effect from those because today I am headache-free which is a real blessing.

I was being woken at 4am every day with these head pains so I have been chronically short of sleep which is obviously bad news for anybody, let alone someone with M.E.. Last night - having finished the antivirals on Wednesday - I slept a solid 8 hours so hopefully my exhaustion will be less today.

Just got to get rid of the nerve pain in face and teeth, the earache and the blisters in my mouth.

Yes the anti-virals can have nasty side effects, I had nausea and obviously a complete lack of appetite, as well as heachaches.
Glad you are off them now and feelin at least better due to a lack of side effects. And getting rid of the nerve pain must be such a relief. Be perpared for residual pain from time to time though, I got this for several weeks after I had recovered.But you may not get this at all.
Take care.xx

Sparklefizz , I am so sorry you are feeling so poorly and all this on top of your ME. I have no experience of ME or shingles (luckily for me) so I'm no position to help / advise. I can only send you hugs and sympathy , nerve pain is horrendous! Being alone must be very difficult for you and I sincerely wish you well and hope the responses you have had on GN go some way to lifting your spirits. Thinking of you .💐💐💐and do hope you begin to feel a little bit better very soon.

Baggs

MayBee70

I’m furious to hear that you had to fight to get antivirals. And, as I’ve said before I’m angry that nothing is being done to help people with ME. I really thought it would change with so many people having long covid.

Could it be that what to do about ME is, as yet, an open question, that research into effective remedies is still fairly new?

I think it all goes back to ME being branded yuppie flu and since then has never been taken seriously, even by the medical profession. To be honest it was only when I met a ME support group that I realised how many people suffered from it and how debilitating it is.

Sussex and Kent ME association run by Colin Barton give lots of helpful advise.. even if you don't live in the area.. easily contactable through google.. I hope they can help you

MayBee70

I’m furious to hear that you had to fight to get antivirals. And, as I’ve said before I’m angry that nothing is being done to help people with ME. I really thought it would change with so many people having long covid.

Could it be that what to do about ME is, as yet, an open question, that research into effective remedies is still fairly new?

Oh so sorry Sparklefizz. I remember your earlier post and so sorry you are having such a very bad time.
I have no advice I can give but sending lots of sympathy your way and hoping that things improve very soon for you.

I’m furious to hear that you had to fight to get antivirals. And, as I’ve said before I’m angry that nothing is being done to help people with ME. I really thought it would change with so many people having long covid.

Thank you everyone for your support.

Yesterday I finished the 35 doses of antivirals, and have discovered that the 7-day raging headache must have been a side effect from those because today I am headache-free which is a real blessing.

I was being woken at 4am every day with these head pains so I have been chronically short of sleep which is obviously bad news for anybody, let alone someone with M.E.. Last night - having finished the antivirals on Wednesday - I slept a solid 8 hours so hopefully my exhaustion will be less today.

Just got to get rid of the nerve pain in face and teeth, the earache and the blisters in my mouth.

Jaxjacky

Sparklefizz is there no one to help you? How are you drinking or eating if you’re bed bound?

I am housebound not bed bound, Jaxjacky, and those of us who live alone like I do have to manage somehow. If I want a glass of water, I have to get up and fetch it. I have no one local who can help.

Was wondering how you were doing Sparklefizz, am so sorry you feel so bad on top of the ME you already struggle with.
I don't have ME but other health issues, and with the shingles I became very tired and depressed, your shingles sounds worse than mine though because the nerve you mentioned is a horror.
Am hoping you have adequate pain relief, do ring your GP or nurse if you can if you feel it isn't enough.
I took Feroglobin with vit B, is a gentle iron with B vits and am not sure how successful it was but I did start to rally round a bit more, you can also get it with vit D and ginseng.
Wishing you all the best.

That sounds awful Sparklefiz. You have been treated poorly by your GP. I hope you've been given decent pain relief.
I've got shingles too, along with Chronic Leukaemia and a dodgy heart but my rash is upper back and front and I can sooth it with
my own concoction of crushed aspirin in saline. I take two panadol and a codiene phos at night and that helps for most of the night. Then I take two nuromol in the morning.
I'm not too bad energy wise in the morning but run out of steam about lunchtime n have to lie on the couch for a couple of hours or more.
Do you have anyone to help you and get you food and drink and meds? Are you able to get home help?
I don't think much can be done about the fatigue unfortunately, though being able to have a decent nights sleep does help.
I hope you feel better soon.

Sparklefizz is there no one to help you? How are you drinking or eating if you’re bed bound?

I too have ME, along with other things, I’ve never had Shingles, but sending empathy and a big hug!

Get your microbiome healthy and it will help you. You would have to do your own research

Thank you so much Baggs. My dentist diagnosed me and send me off to the doctor for antivirals, with a letter and photo to hand over as proof, but no doctor or Nurse Practitioner could see me and just offered to text me later in the week. I insisted on being prescribed the antivirals and a prescription was sent to the pharmacy without me seeing anyone.

My surgery is rubbish.

Sorry no advice, Sparklefizz, but I’m sending a bucket-load of sympathy. Has your GP or Practice Nurse suggested anything?