Can I get more help?

[Mcnallyl]

Recently diagnosed in May. Rheumatologist discharged me as soon as he made diagnosis. GPs just want to prescribe medication. Is there other help I can get to help manage these awful symptoms. I'm really struggling with juggling work and home life whilst constantly in pain, fatigued and unable to think clearly. Help!

[Hidden]

Hi

I'm so t you feel so rotten. My consultant suggested steroid injections which I'm now waiting for. Take care Lynne

[neesey1005]

Hi I have been diagnosed for over 5 years (probably had it about 9) - I have tried lots of different meds in the beginning- nothing was good for me (side effects) so for the past 3 years I have been drug free (except the odd painkiller and sleeping tablets) - I also use tens machine - the only things that help me is - pacing , gluten free , wheat free diet (and no process foods) - regular swim, aqua aerobics and walking , also as stress is the catalyst to my pain - try not to get stressed (difficult one) - I had to give up work - just couldn't work and pace - wishing you best of luck

Ps - read , ask - get as much information as you can about fibromyalgia if really helps

Neese x

[RayB in reply to neesey1005]

I second all that Nesse says.

While at the same time watch the weight!

Heat is useful localy to help relax or at least soothe areas of pain and tight muscle,, simple as just a hot water bottle, heating pad or something more exotic like an infared sauna,, I myself spend a lot of time under an far infared lamp,, the most useful thing I ever bought.

It really is about learning and working with the individulal symptoms.

Some find accupuncture useful,, many gentle phisio or the pool others can't cope with it.

Probably usefull to add in Vit D3,,, best with a bit of K2 as they are used together and you can get them in the one tab but don't expect to walk into H&B and come out with the two combined,,, a nice clean form of Magnesium like magnesium cirtate powder is also a usefull addition. I say avoid H&Barrett as they probably will not have either,, you can get them on one of the online auctions. It is very common than not that those with fibro are deficent in Vitamin D,, I always recomend D3 instead of D as D is the synthetic form and realy quite toxic. We tend also to be rather short of magnesiun, which is somthing that is needed for muscle to relax ,,, Im talking body chemistry here,, but it is also used in over 300 body processes and that is only the ones they know about to date.

Also try to keep very regular bedtimes,,, and sleep in TOTAL darkness.. light affects melatonin production,,needed for sleep.

I also think it prudent to turn off ALL wifi at night which includes not sleeping near the mobile phone EMF/RF disrupts sleep which has a major impact on the condition.

Fibro really is a bit of a learning curve.

Learn Learn Learn, way beyond the Dr,, and while the Dr is there,,,, well,, Just lets say I have had it for almost 18 years,,,been there bought the teeshirt,, just because someone says something don't mean it's gosple and that goes equaly for the words of Dr's

You have to become your own expert and that means searching experimenting but most of all learning a little deeper than the information at street level.

That's my tupence worth!

Ray

P.S. Welcome Along!

[neesey1005 in reply to RayB]

Wow - you are a mind of information 😀

[RayB in reply to neesey1005]

Neesey,,, rapidly forget more than I learn nowdays!

I have however always concidered obstinance and determination virtues especialy my own,, I never take the word of the masses and never the easy road.

I quickly dismiss the "yes men" when they have nothing new to say,, but the odd man who is preparied to stand up against whatever he must now he is one to be heard,, even if he is not right,, they are the only ones through history that have ever really achieved greatnness yet dismissed and dispised in there day only to be proven right.

They say faith will move mountains and there are alot of people out there with faith and determination they are the ones I want to read the ones that are perpaired to do battle whatever and whoever comes.

Who was it that said it's pointless repeatedly doing the same thing and each time expecting a different result,, yet with fibro that seems to be what is happening.

In the ;ast 18 years I have searched far and read wide and follow the path that makes sense in my mind,, that's all!

I will likely continue as I do so to the day I drop.

If anything I try to get people to see that they have to keep searching and learning and trying,,but more than anything I try to share my experiance,, sadly most today adhere to convention ridgidly they never chalange the status quo,, which really is the road to nowhere.

Ray

[PurplePotter]

That is exactly what happened to me when I was diagnosed a couple of years ago!! I highly empathise, it's so frustrating. I used codeine for quite a long time but then realised I was addicted so came off it (that was hell, but it wasnt that helpful anyway). I am now on naproxen which helps a bit as I also have ankylosing spondylitis which is inflammatory, but doesn't really help the fibro much.

I'm sorry I cant be of much help but sending lots of love and support, and if you get any answers I'd love to know also!

Xox

[Badbessie]

I have just finished a pain management programme. It it not a cure but I found it did help in a few ways.

[Mcnallyl in reply to Badbessie]

Is that something the GP would refer me for?

[Hidden in reply to Mcnallyl]

Pain management group I also have had the pleasure of doing that 8 sessions and wow I personally was more depressed after doing it basically.most of the people i was on my course with were trying to dodge having to work.and the few genuine ones were lovely but a good bit older than me,an I was thinking yeah your bound to be in pain and tierd etc when your 70 -80 no offense to anyone out there but thats how my group was.

The one thing I learnt was you have to try help yourself with this condition simple as.try keep mobile when you can eat and drink well Healthy haha vitamins protien. Learn to pace yourself this is very important hard to do but very important.👍

[YASMINTINA FMA UK Volunteer]

healthunlocked.com/fibromya..., morning like many will say pacing is one of the very best ways to work with fibro but very difficult if your working as well, some members have given up as it became too much ,while other reduced their hours to try cope that way. I try pacing through my day When ever I can even if it’s for ten minutes here and there, not working due to conditions but have a 2year old grandson to help out with . Soaking after tea in an epsom salts bath and winding down with a good film/drama I switch right off until the next day and feel most days I am able to bounce back ready, I learnt to say no to social activies , perhaps a meet up with friends now and then for a meal at weekends but gone are the days of trying to please everybody as had a lasting effect . I do use codiene if really need be from Doctor, rub in pain relief gels are helpful, as is heat for me wheat bag, hot water bottles . Hopefully you will find the forum a good place to have a chat and read posts with helpful tips and advice, there is a link above if you would like to lock your posts then only our community can see, take care.

[Hidden]

Everything neesey1005 says. Try any small things that help—- tens, Epsom salts, gels, creams, sprays, heat, pacing.

I’ve tried every regime I could find over the last few years and the only one that is helping my energy levels is Vitamin B1. I take 2 x 100mg B1, 1 Selenium, 1 Folic Acid and 1 Vitamin D each morning and 2 x 200mg CoQ10 per day. Took 3-4 weeks to have any effect but my energy levels are almost normal. I actually feel like a human being again after 4 years of utter misery. Pain is less, just need a couple of paracetamol to get me through the day but burning pain in my legs when I walk has gone.

It’s cheap and I don’t think any of these vitamins can do any harm.

[Mcnallyl]

Thanks everyone! Pacing would be great but I'm only 36 and need to work to pay the mortgage and I'm a secondary teacher which is non-stop and stressful. I also have a 6yo child to care for. My back, hips, hands and feet are in agony by the end of the day. I'll try some of the supplements that have been mentioned and ask about the pain management course. Thanks for the info guys much appreciated 🤗

[Hidden]

Hi

Mainly joints

I have degeneration of the facet joint, oa in my knees, it feels like its elsewhere too. I know I'm having about 5 injections and yes I know they don't work for fibro but thank you anyway. Love and hugs Lynne xxxx

[Hidden]

Thank you