Help, My Fibro symtoms have got worse - Fibromyalgia Acti...

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Help, My Fibro symtoms have got worse

Larnie1 profile image
11 Replies

Hi, I'm new here. My GP diagnosed Polymyalgia Rheumatica in December 2018 and in April 2019 the Consultant diagnosed Fibromyalgia instead. I have been taking Pregabalin 75mg twice a day since January 2018 due to nerve pain in my leg and foot due to an accident. Up till now the Pregabalin has helped my Fibro symptoms. However, the last few weeks my symptoms have returned. Aching muscles in my arms and legs, restless leg syndrome, brain fog, and the nerve pain in my leg and foot has increased. Can anyone help or advise different treatments I could try, to help with the symptoms, as I don't want to take more Pregabalin

Thanks

11 Replies
desquinn profile image
desquinnPartner

that would be a starting does for pregabalin so I would go back to the GP and see about increasing it or having a chat about what you should be doing about your pain.

but as you say you do not want to take more but do not say why you do not then again its a conversation with gp and maybe think about gabapentin, amitriptyline, duloxetine or something else non drug related. There are a lot of things people can try but what works for one does not translate to someone else.

Larnie1 profile image
Larnie1 in reply to desquinn

Thank you desquinn. I have an appt with my gp this week to discuss other options. That's why I have joined your group. Ideally, I want to come off medication completely, but I realise that may not be possible. I was on Prednisone for over a year. It took 8 months to slowly get down to coming off that completely. That was 8 months ago. I can see now it will be trial and error and will have to work out what's best for me.

Painny profile image
Painny

It’s a challenge to find out what works for us, I just put up with my sleepy brain, brain fog etc and rely merely on gentle physical activity like walking, going to gym, doing my own physio. I tried swimming over the last two weeks but the cold water made my conditions worse and stayed in bed for 3 days.

Have you tried to have Epsom salt bath or cbd oil? They do not cure but ease the pain to some extent.

I hope you will see your GP soon. My own GP referred me back again to the physician.

Best wishes ☀️

Larnie1 profile image
Larnie1 in reply to Painny

Thanks Painny. Your reply has encouraged me. It's good to see how you have coped without medication and trying other things to help with your symptoms. I will try the Epsom Salts. I have bought cream which supposedly contains cbd, but it never worked for me. Perhaps I should try other forms of cbd. I have an appt with my gp on Wednesday. Ideally, I wanted to come off Prebabalin, and try other things to manage my pain, like acupuncture and a light exercise plan. But to be honest, I'm frightened to take the plunge!! Thanks for your help 🙂

Painny profile image
Painny in reply to Larnie1

🙏🏻🤞👍☀️

Jbell22 profile image
Jbell22

I was really against taking medication. But I really couldn't cope with my fibro. I currently take 300mg of pregablin a day but doesn't always work for very long. I have found acupuncture has been helpful for me in the past as well as massages. I havent found much else that helps me personally at this time and have though about trying cbd myself

I hope you have better days. And wishing you well xx

Larnie1 profile image
Larnie1 in reply to Jbell22

Thanks Jbell. I think I'll end up having to take a higher dose in the end. But I will try the massages and acupuncture too. Obviously I have read about other treatments, but it's so good to hear other peoples experiences and if treatments have helped. It can be so depressing and I feel sometimes my family and friends dont really understand how I feel. Thanks again xx😊

CheetieCat profile image
CheetieCat

Hi Larnie1

Magnesium is really good for muscle aches & restless legs, I find the magnesium spray works better for me & use it all the time. Better You or H&B do their own, £1 difference but both are good.

ps They're in the penny sale just now

Larnie1 profile image
Larnie1 in reply to CheetieCat

Thank you CheetieCat. I will get the magnesium spray. I have used the other oral sprays before as I'm not good at swallowing tablets. Thanks for your help 🙂

Midori profile image
Midori

I would suggest a visit to the GP and ask for a change of medication. The hot weather hasn't helped a lot, either!

Larnie1 profile image
Larnie1 in reply to Midori

Thanks Midori. I'm seeing my gp on Wednesday. I'm going to ask to reduce the pregabalin to 50mg twice a day and try other treatments as well. Then, if I can't manage the pain, I will get him to increase my dosage again. Yes, the hot weather has been hard to cope with, and I'm so pleased its now cooler!! Thanks again 🙂

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