Crisis: Hello, I'm new to site, I was... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Crisis

Karen2207 profile image
13 Replies

Hello, I'm new to site, I was diagnosed with fibro in 2017, at the time of diagnosis I was discharged from consultant and sent on my merry way. I have never been prescribed any medication. I have noticed if I do too much I then get knocked off my feet for days in pain, feeling extremely lethargic etc, also always get a really bad swollen sore throat and high fever alongside this, every time I have seen the GO I get told it's a throat infection. I'm now only beginning to realise fibro you can have crisis and flare ups, I'm off to on call medic shortly as been I'll for 5 days now. I can't believe that I have never been prescribed any meds and being left to suffer this way.

Does anyone have any valuable advice please?

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Karen2207 profile image
Karen2207
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13 Replies
AllthatGlitters profile image
AllthatGlitters

Hi karen

That sounds like my symptoms, if I do too much one day, I am sore and absolutely floored the next day. I can be teary, in agony, feel spaced out etc ... I believe I had fibromyalgia for many years. I was only diagnosed last year after changing doctor who looked back my records and the amount of times I had been to the doctor with complaints of feeling tired all the time. I always felt a pest to the doctors and I always go there impression I was putting it on. Work became a chore and I struggled to work full time, people around me thought I just wanted to work less because that’s just what I wanted to do. Erm no ......

I think you should find a GP who is supportive, even if it means changing GP, go in with a list of your symptoms, tell them you think you have fibromyalgia. If they don’t think you do, question why they don’t think you do.

I am on nortryptaline and that helps me, I had previously been on other anti depressants to help with the pain but it didn’t do anything for me. It’s trial and error with the meds, what works for one won’t work for the other.

Rest is also key, listen to your body, I find that heat helps, a hot shower / hot water bottle.

I have other conditions so it’s sometimes difficult to work out which one is causing me the pain on that specific day. Do you have any other illnesses?

If you need to chat send me a PM.

Wishing you all the best and hope you get something sorted soon x

Karen2207 profile image
Karen2207 in reply to AllthatGlitters

I was diagnosed by a consultant in 2017, thing is I've been left in pain to manage alone with no meds. Every time I go to my GP he tells me he can't give me anything. I've been to the out of hours GP today and he's gone mad, he has given me 2 weeks of a 7 day bupramorphine patch for the pain and told me to get emergency appt in the morning for long term medication. I had to change my job from on my feet all day to a desk job, however that isn't helping if late. I normally do listen to my body, however I'm only young and still want to do things with my hubby. I took my weekend away at ease and had regular sit downs for 20-30 minutes with a drink. So thought I would be OK.

He said due to doing too much it has caused a flare up, plus caused my immune system to be very low causing a vital throat infection, which is what always happens.

skit profile image
skit

Hi & welcome to the forum. Please send for patient booklet from fmauk.org it gives information to help additionally there is a GP/medical booklet you can get to be sent to your named GP. Highly suggest when you have yours wait about a week then get appointment with named GP and say'I'm here to discuss a treatment plan for my Fibro please'

If you do not get any help then change your GP! Possibly a return to consultant is required? GPs do not always have up to date info on medications suitable for Fibro. Immune system is down with your stated health having a long term condition can mean taking a good look at what one eats to bolster immunity.

Karen2207 profile image
Karen2207 in reply to skit

Thankyou I have completed this x

Are you in the UK? I think unless you go to your GP and say I want help with sleeping, I want help with pain, etc they’ll not do anything . There don’t seem to be any follow up appointments with rheumatologists once they’ve diagnosed fibro, and there seems to be almost zero communication between health care professionals. I’ve only seen a GP once since diagnosis 3 years ago and that was something other than fibro symptoms. GPS are being discouraged from prescribing painkillers and they’re not interested in alternative treatments ( in my experience)

You might be able to self refer yourself to physiotherapy at your local hospital and get some advice and ideas that way.

Karen2207 profile image
Karen2207 in reply to

Yes I'm in the UK. I originally got passed from one consultant to another and discharged. Seems they don't care if your in pain. I've been on numerous occasions when I'm like this and told it's viral infection given penicillin. I went couple months ago due to increased pain and told nothing I can do for you. I'm a nurse myself and have asked for specific meds and told no. Like I have said above the out of hours GP today has gone mad and spent 30. Minutes with me.

He has given me a small dose of morphine patch for my pain and advised I demand an emergency GP appt tomorrow for duloxetine, amitriptyline longterm

BoohPear profile image
BoohPear in reply to

Hi 06hollyberry,Almost identical to you. Got sent to Spinal clinic by Rheumatologist who referred me to a physio. My case was opened and closed within one hour appt. She said you've been like this for more years than you know, I'm closing your case as I can do nothing for you !!!!! Got pain killers off doc and this is the doc who let me suffer for years saying I've got arthritis so what do I expect . Just reading Karen 2207 and wondering how much longer we are going to be treated by these docs that make us feel a nuisance . Warm wishes 😽

Well at least that’s one doctor that has a clue. It must be frustrating for you being a nurse, you know what meds you need needed and can’t get them.

Regarding the feeling you have a virus, that is the first clue I had that I had fibro, but I didn’t realise it as the time. I lived in a very rural area and, to me, kept going down with a mild sort of flu that lasted a couple of days. I kept complaining to a friend that it seemed to happen every time I queued in the village post office, I was sure the place was full of bugs. It was a few years before I realised that of course on days I went to the PO I’d already done a dozen other things running around market, shops , bank etc so it was fibro exhausting me.

I’ve learnt more about fibro and self care on here and I think it’s far more than Drs know. Find all the things you can that reduce your pain a little —- hot water bottles, heat pads, gels, hot baths, Epsom salts and so on. You’ll then have a few things to hand to help you. I’ve found my tens machine the best thing I’ve bought.

Good luck with your GP appointment— hope you get sorted with some meds.

Karen2207 profile image
Karen2207 in reply to

Thankyou for your reply, I agree in the medical world knowledge is very limited. I don't want this to take over my life at 47. To know eveytime you spend a nice weekend away with your partner your going to 'be laid up for days is not good.

Still feel rough this morning which is now day 6.

If you have any advice it would be much appreciated please x

Hi

I'm sorry you feel so rotten. Glad the out of hours GP helped. Please let us know how get on with your emergency appointment. Love and hugs Lynne xxxx

Karen2207 profile image
Karen2207

Hi guys, I got into GP, they have told me to continue with the Naproxen that was prescribed last month and they have prescribed 30mg Duloxetine, if this doesn't help within 4 weeks they will increase to 60mg.

I forgot to say yesterday I was originally commenced on gabapentin in 2017 within 6 hours it had caused my eye to haemorrhage. In November last year they gave me pregabalin and the same thing happened.

in reply to Karen2207

Omg, never heard of that before! It shows how differently people are affected by the meds. Look into other things that might help you — hypnosis for pain by a Michael Seeley on YouTube, Epsom salts in baths, turmeric, relaxation, swimming, anything that’ll help just a little.

Karen2207 profile image
Karen2207

Well that was a disastrous nigh, not only feeling so weak with my flare up, too top if off I've had chronic diarrhoea all night 2 hours after taking my 1st dose of Duloxetine, i now feel absolute awful. Call to GP again this morning it is 😢

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