Newly diagnosed

[Ashleighm94xxzx]

Hello everyone ☺️I’ve only recently been told I have fibromyalgia after years of pain and having no answers to what’s causing it! I had been on painkillers for around two years but have now come off these! Can anyone give me any tips on how to manage pain and increase my energy? Thanks so much

[ChunkyDuck]

Hi! I've no advice, but I've just posted about the same thing. It's super frustrating isn't it! Would you mind sharing your story?

[Dinkie]

Hi Ashleigh and welcome to the club nobody wants to be in.You will find as you go, that what works for one person may not work for another. I’m afraid it’s very much a case of trial and error.

Personally and I can only speak for myself diet plays a huge part. No processed foods or refined sugars. If I fall off the bandwagon then I pay for it.

Epsom salt baths help with muscle aches and pains. Hot water bottles, heat pads, tens machine, biofreeze gel all have their place in my arsenal.

Have you had your Vit D levels checked as low vit D can make muscles sore and ache.

I can’t tolerate prescription meds, like a good few of us in here so it’s finding alternative ways of helping with the pain.

The art of pacing oneself is also important- if you are having a better day don’t go like a bull in a china shop and try and get everything done because as sure as eggs is eggs you will have the fibro sprite sitting on your shoulder laughing and demanding payback for overdoing things.

Occasionally I use chiropractor and hypnotherapist as and when funds permit.

Gentle exercise such as tai chi or even a gentle stroll help too.

May be worth getting a referral to pain clinic to help you or the Guys and St Thomas’s fibro clinic - the latter is one appointment to put together plan of action for you and your GP.

Good luck in finding what works for you.

[Ashleighm94xxzx in reply to Dinkie]

Hey! Thank you so much for you’re reply! I haven’t had my vitamin D levels checked I’ll need to look in to that & also I didn’t know that about the diet but I have noticed if I have certain foods I am absolutely drained didn’t think it was all linked I thought I maybe had some sort of allergy!

I was prescribed cocodomal and naproxen I was on the cocodomal for around two years to help with pain but they were really messing with my stomach I have since came off them but I’m finding it really difficult to get through a day at work without wanting to curl up and cry with the pain I’m in!

I’m going to take all you’re advice and try every way possible to get some relief

It does feel like a relief to finally get an answer to what is going on with me though!

Thank you so so much for all the advice 😊

[Hidden in reply to Ashleighm94xxzx]

I found out after a year on that combination that they're supposed to prescribe medication to protect your stomach, such as Omerprazole. Try a pain management course, they really help as you get to pick up relaxation tips etc

[Hidden in reply to Ashleighm94xxzx]

Naproxen is evil... I was on it for years and Diclofenac for years...also evil... they rot your stomach... I too took co-codamol but was so ‘mashed’ I just had to go to bed and sleep... also really trippy when I stopped..

I take Omeprazole for my tummy now and have had no probs..

Also Amitriptyline which helps me sleep more soundly (have put on loads of weight though).. also Flouxetine (prozac) an anti-depressant which ‘takes the edge off’....

Everyone is different... I am also on DMARDS because I have RA as well as Fibro, but I believe Sulphasalazine is sometimes prescribed.... you will have to ask your Rheumatologist.... ask your GP to refer if you haven’t seen one yet..

Also.. get some counselling... I don’t know your story obvs... but Fibro can be linked to Trauma xxxx

[Ashleighm94xxzx in reply to Dinkie]

Also, is there anywhere I could go for a diet plan that might help? Thanks

[Dinkie in reply to Ashleighm94xxzx]

Just a case of trial and error. Try keeping a food diary as that may help pinpoint those foods not helping you. Also useful to keep pain diary too. I know when I saw my rheumatologist as soon as I walked in the consulting room my brain froze and I couldn’t remember a thing I wanted to say.

[Peacocksuit in reply to Dinkie]

Hi, did your rheumatologist explain the link between diet and your illness ? Why certain foods trigger symptoms?

[Dinkie in reply to Peacocksuit]

You’ve got to be joking😂 - Seriously though she just wrote fibro on a piece of paper and said we don’t treat it here involved discharging you back to your GP and that was it. Everything g I’ve discovered worked for me by trial and error and by reading posts here. In our area you are left to your own devices. Took me 2 years to get a referral to Guys and St Thomas’s fibro clinic

[Hopinggh]

Hi !Im starting medical marijuana soon. There are strains called Sativa that help energy (alot) as well as pain, nerve pain and neuropathy.

Good luck and hope you find relief!

Hopinggh

[Beachcomber53 in reply to Hopinggh]

How did you go about getting that? I’ve had to come off pregabalin, propranolol, venlafaxine and co-codamol after 3 years as they just stopped being effective and now I’m having to rest for the majority of the day to keep the pain at a manageable level. I’m sure others will want to know too including Ashleighm94!

[Hopinggh in reply to Beachcomber53]

Hello. I'm from the U.S. There are special doctors here for that who you can look up online for and make an appt to see that Dr. You also then apply to.the govt for a card.

I, also, have to rest most of the day because of the pain.

Hope you find some relief.

Wishing you a nice day !

Hopinggh

[Beachcomber53 in reply to Hopinggh]

Sadly, for both medicinal and medical wealth of knowledge reasons, I’m in the UK which is less progressive. I did mention medicinal marijuana to my GP last year when I began to have doubts about the efficacy of my meds but she advised although it is now available on prescription in the UK it would only rarely be prescribed for specific conditions of which fibromyalgia is not one. I was hoping that situation may have progressed ☹️. I’d be interested to know how you get on with it and will ask my GP again in the new year xx

[Hopinggh in reply to Beachcomber53]

Good morning ! here from USA,

I hope it works and you can eventually have it there too. I thought I had neuropathy because of the burning. First Dr feels it's fibromyalgia because it's so widespread. They would approve someone here if it's a chronic pain (any kind) with validation of your pain I.e. pain Dr visits, tests, meds .

It will take a few weeks to get approval and a month to get my card. I saw the MMJ Dr yesterday. Insurance or Medicare does not cover this and its very expensive to start...hundreds $ for the Dr and $75 . For the govt card.

What is a life worth ? I feel I've suffered enough and hope it works. There are different strains and strengths. I would try to stay as low as possible and hope to feel as normal as possible.

Yes, I will post on here and let you know of any progress in irradiating this pain.

God bless! Have a happy holidays !

Peace.

Hopinggh

[Pollypo]

Hi it’s the horrible side effects with the drugs that makes it worse. I’m now taking cbd oil and vitamins. Heat helps too . I pace myself when need to.

[Hidden]

Vitamin D...Vitamin B12 ...

[Hidden]

Also as mentioned... your physio can refer you to a Pain Clinic....