Help me understand the disregard for ... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Help me understand the disregard for my condition

Burns1965 profile image
35 Replies

I was diagnosed with fibromyalgia last year and just resently with osteoarthritis I have had a muscle disease for years, but have found no help whatsoever of my gp and suffer terrible with the pain i.m in. I have however managed to refer myself to pain management I have felt like I have been in so much pain with no understanding or compassion of any 1 even my gp and the specialists that have diagnosed me. Once I was diagnosed I was discharged for every 1 like I did.nt matter

35 Replies
Bobby3 profile image

We got the same sore Specialist once was told it was slow crippling disease and there was nothing they could do for it and we would end up in wheelchair Referral to pain Clinic was told as we had done pain course and was on Morphine there was nothing more they could do!!!

in reply to Bobby3

Told the same here to!

MavG profile image
MavG in reply to

Yes I have had exact same response and nine months on still waiting for appointment with Rhemy. At least we have each other on this site, it keeps me going.

Bobby3 profile image
Bobby3 in reply to MavG

Yes you just have to do what fills right for you we do try most things just painkillers and us do not get on so so last resort is Morphine. 🤪

LadyJoro profile image
LadyJoro in reply to Bobby3

Fibromyalgia does not have to result in you being in a wheelchair

With good self care and pacing you can have a life, it may be less busy than your previous life but it’s still a life.

Sitting doing nothing makes fibromyalgia worse

A very gentle rehab plan with strengthening exercises like Pilates and using resistance bands makes a huge difference.

Bobby3 profile image
Bobby3 in reply to LadyJoro

Yes know that was just stating what specialist said, we use trigger therapy and massage .

Magnesium oil and baths 🛀

LadyJoro profile image
LadyJoro in reply to Bobby3

I can’t do baths, I’m hypermobile, the heat makes my joints too unstable.

Vitamin D supplements are a good idea if you don’t see much of the sun as low vitamin D levels causes similar symptoms which can aggravate Fibromyalgia

LadyJoro profile image
LadyJoro in reply to LadyJoro

Taking opioids can actually make fibromyalgia pain worse too and that’s all our local pain team offer, the pain is caused by increased muscle rigidity.

mcglada0 profile image
mcglada0 in reply to LadyJoro

I take Tramacet (tramadol and paracetamol ) twice daily. Will that fairly small dose be making my pain worse?

LadyJoro profile image
LadyJoro in reply to mcglada0

Everyone’s reaction is different, you may be able to reduce the risk with massage and foam rolling but long term use even in small doses runs the risk of muscle rigidity which hurts like hell

mcglada0 profile image
mcglada0 in reply to LadyJoro

Oh dear! I think my muscles are rigid already! And they are do sore! Thanks for your reply. I will have to try and cut back. It’s hard when you’re in pain and the tablets give temporary relief. However, I now understand that they are probably making my pain worse. X

LadyJoro profile image
LadyJoro in reply to mcglada0

There are some studies that suggest magnesium and vitamin D help

I use CBD oil 25mg 3 times a day

If only I could find the cause of my head aches (for which I take paracetamol with decongestant) I’d be off pain meds all together

mcglada0 profile image
mcglada0 in reply to LadyJoro

I have just started taking CBD oil and hoping that this may help. I’m at 12.5 mg per day. Trying to build up slowly. So far I haven’t felt any better with pain and fatigue. I notice that you are taking a much larger dose . Is this helping your pain. I think I will have to work up. X

mcglada0 profile image
mcglada0 in reply to mcglada0

Do you mean 25mg daily or 75mg daily? Sorry for being a bit thick. CBD is quite new to me but I am hoping that it is a way of getting off painkillers and helping pain and fatigue.

LadyJoro profile image
LadyJoro in reply to mcglada0

I take a 25mg capsule 3 times a day

75mg daily

ZoBo profile image
ZoBo in reply to mcglada0

What's CBD

LadyJoro profile image
LadyJoro in reply to mcglada0

Only thing it doesn’t get rid of is this sodding headache

Really need to get my daith repierced cos that seemed to stop most of the headaches

My muscle pain is only an issue if I over do it or have an actual injury.

I am at uni full time studying sports therapy and I run guides/scouts 3 nights a week.

I spent this morning working pitch-side for 3 hours

Balanced with a quiet afternoon in front of the computer and I’d be great if it wasn’t for the headache.

I get a massage every fortnight, do Pilates and use a foam roller in between.

jools56 profile image
jools56 in reply to LadyJoro

Can you explain about the foam roller please, I've not heard of it before. How exactly does it help your fibro symptoms? Also I am a recent convert to CDB oil, it have been effective in taking away that "always there lurking" aching, and I'm sure a recent flare up was less severe. I'm using less painkillers (generally paracetamol for day to day non-severe pain).

LadyJoro profile image
LadyJoro in reply to jools56

A foam roller is used to stretch and release tension from muscles in between sessions with the trainer/therapist.

Think self deep tissue massage.

I found that normal stretching wasn’t enough to release the tightness in my muscles especially in my legs, but the foam roller helps.

Start with a plain one with no bumps on it.

Take it easy to start with, it’s worth persevering with.

ZoBo profile image
ZoBo in reply to mcglada0

Ooh that sounds like me. Where was it written that painkillers can make muscles rigid?

LadyJoro profile image
LadyJoro in reply to ZoBo

Zobo it’s in the patient info leaflets that come with the meds and on any website that lists drug side effects and interactions.

It may be listed as hypertonia

Other side effects in the common (1 in 10) catergory include



back pain

limb pain

neck pain

muscle cramps

muscle spasms

joint stiffness

muscle twitching


Head aches in as many as 1 in 3

Aren’t they all things we are trying to get rid of?

in reply to LadyJoro

Is there proof of that as I've not heard it, 🤔 Unfortunately if you have other painful conditions sometimes they are the only answer to manager the pain

LadyJoro profile image
LadyJoro in reply to

It’s in the tramadol patient leaflets that tramadol causes muscle and joint pain

mcglada0 profile image
mcglada0 in reply to LadyJoro

It is so lovely to read a positive reply. We all need to have faith / hope that we can adapt our lives but manage to have a life.

mcglada0 profile image
mcglada0 in reply to mcglada0

I am referring to LadyJoro’s post.

LadyJoro profile image
LadyJoro in reply to mcglada0

I refuse to give up

I’m a sports therapy major and have learned more about graded rehab myself than the physio I saw seemed to know.

I found that the hospital physio hadn’t taken me far enough back when they gave me a rehab plan so it did more harm than good.

Hydrotherapy is amazing but isn’t offered enough on the nhs

devils_reject101 profile image
devils_reject101 in reply to LadyJoro

Im trying to do a gentle rehab plan but often I can hardly stand up due to dizziness, nausea and head pains etc. I feel like I can drop down dead. Any care plans are fine until I get a major flare and I'm literally off my feet. I do have CFS,DDD, Burstitis and a few slippeddiscs and arthritis. I cant see an end in sight because I'm not fit to do much and loo king after my 2 children takes every last thing I've got. Im at my wits end as every gentle exercise program I start I cant continue, Its so frustrating.

LadyJoro profile image
LadyJoro in reply to devils_reject101

Do your flares have a specific trigger?

I found if I slowed down the progression and added massage in weekly I managed to reduce flares.

Beachcomber53 profile image

You must change your GP to one that understands your condition at once - that’s vital to getting your pain under control. Next get some counselling (self referral) to help you come to terms with your diagnosis and come to terms with your new life, give you the support you need and build up your self worth because only you can fight for you! Get some physio for your arthritis and to maintain your mobility.

Get letters of : diagnosis, continued care plan, general effects on your mobility and long term prognosis then start your PIP and ESA claims - stay in counselling because you’ll need support through the process. Get advice on charities near you that can help with the forms as the stats show you’re more likely to succeed if you do.

Deep breath! consider antidepressants such as venlafaxine which help with fibro pain and aid sleep which can reduce the pain. pregabalin really helps to deal with nerve, bone, joint pain and stiffness. Start meditation, Tai chi, yoga, counselling...... anything that helps you quiet your mind, stop the self doubt and relax to ease the pain. Once you accept your condition and stop fighting it you can allow yourself to relax and others will more readily accept it too - I’ve been there!

Get some helplines on your phone - you may never use them but knowing someone kind is at hand night or day can really help - especially at 3.30am 🤗.

Take a warm bath with Epsom salts any time you need to. stop expecting too much of yourself, start to be realistic re what you’re capable of doing and forgive yourself for not being as capable as you used to be ......... this is a long road but we’re here for you xx

LadyJoro profile image

The rheumatologist discharged you because they can’t do anything more for you.

All your care needs can be met by your GP and the pain team so why would you need to see the consultant again?

Most treatment plans for fibromyalgia are self care based

If your GP isn’t being helpful then look for a new one with experience in treating fibromyalgia. There are lots of options to try the problem will be finding ones that don’t clash with your arthritis treatment

Gentle exercise like Pilates or swimming followed by stretching and foam rolling helps sort out the tight muscles caused by fibromyalgia.

Midori profile image

Unfortunately, this is the attitude all over the country. Very few GPs have the time or interest to research what can be a very nebulous condition, and all the variations it presents with.

Fibromyalgia is not a 'tidy' condition with consistent symptoms. It mimics so many other chronic conditions and overlaps many more; one reason it is hard to pin down.

I wouldn't wish it on anybody,I've been diagnosed about 6 years; saw a Rheumy twice. Also saw a neurologist to rule out MS; as some symptoms I get are very similar to MS, but the MRI showed no sign of it (thank goodness!).

I'm luckier than many as my pain is controllable with only occasional opioids, and I find a good dose of 'Won't Power', as in 'I won't give in and let it beat me' attitude helps me to cope with it.

Naturally, I have had to give up a lot of my independence, my former sporting and dancing self is no more and I can no longer drive due to failing sight, which has put a large crimp in my lifestyle. I hate asking for help though, even from my son and carer.

Cheers, Midori

Burns1965 profile image

I have multiple health problem and the osteoarthritis and fibromyalgia are just 2 of them I have a muscle wasting disease and osteoporosis which makes it hard for me to do a lot of things

Burns1965 profile image
Burns1965 in reply to Burns1965

I would not take tramadol as it's poppy based and extremely addictive

JDnCoke profile image
JDnCoke in reply to Burns1965

I have been in tramadol for 3 years I personally don’t find it addictive but I find it really helpful for pain


I was diagnosed with fibromyalgia last year, also osteopenia, waiting for a dexa scan to see if I've got osteoporosis. I've also got non alcoholic steatohepititis caused by meds my drs have given me over the years. I have now got a very understanding go who is very helpful. I go to pain management but haven't found them very good. I am now taking ill health retirement, advised by my boss who has been brilliant. I have got a good support network and all of you on here so I do feel very lucky having support. You all take care. Love and hugs Lynne xxxx

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