FM or Arthritic pain?

[arpinsandie]

Hi I'm Sandie I'm 63 and have had FM for 10 years diagnosed I also have osteo arthritis manifested mainly in my hands and wrists which are now deforming. When I get a flare up of FM I find it hard to distinguish which pain I'm having Also I have trouble with support from family and friends who I'm convinced are fed up of my condition and I feel they think I'm a fraud. Bad flare up atm n feeling very sorry for myself My GP gives me Dihydrocodeine and that's it

[Dinkie]

Hi Sandie and welcome to our club. I have osteo as well as fibro so understand where you are coming from. Generally if pain killers help with the pain then it's osteo related. If pain killers don't touch it then usually it's fibro related. Unfortunately it's really hard for friends, family and colleagues to understand. They just don't "get it". Hard for them when one day we can do something and the next we are so fatigued we can't get out of bed. We just have to try and educate them without coming across as moaning and whinging. I'm lucky in that my dog lets my other half know when things are bad because she doesn't bother to ask me to play and is quiet and just wants to sit along side me. Sometimes animals just know :).

My hands, feet, neck and spine are affected with the osteo. I did try hot wax dips for my hands (my daughter bought the treatment as a gift) and I have to say it was lovely and did help with the pain and left my hands lovely and soft. Feel free to rant and rave on here. It's perfectly safe and someone will always respond with understanding and advice. Likewise we do like a bit of a joke and sillyness too and you will frequently find us laughing at the odd things we do which are of course fibro related.

[arpinsandie in reply to Dinkie]

thanks so much I was feeling very weepy and isolated having had to stay at home when I should be at a family event My headache worse than usual and I'm painfully stiff Yesterday brain fog was out of control I have the most incredible daughter whose empathy support and time is given to others but when its me I have the feeling I'm putting it on so I didnt have to go today I cant win I isolate myself so I can be me Unfortunately my fingers are useless at times I take painkillers but have little or no impact My doc suggests I go on a much stronger drug but I think if I have 20 years + left what am I going to take then when I'm used to them? My mother suffered ME and I wished I had of listened instead of dismissing half she said as moaning I should of listened I'm full of regret She passed at 70 riddled with arthritis and ME I do think these conditions are hereditary Thanks for your kindness

[Dinkie in reply to arpinsandie]

We all have days when we just can't do things. We have to look after ourselves and learn to say no however difficult it is. If we don't then we will suffer all the more. You have no need to feel isolated, we may not be "round the corner" but can offer advice, a listening ear, a virtual gentle hug, a giggle and on occasions cry with you. My fingers too are pretty useless. Have to have cups with lids on etc otherwise I just spill or drop things. Took me ages to accept that my life is different to how it was. Have you tried epsom salt baths - they do help with the muscle pains. I have used hypnotherapy, CBT, mindfulness, chiropractor and gentle exercise and a diet of fresh, definitely no processed foods - not a miracle cure but it helps. Hold on in there, darkest hour always before the dawn.

[arpinsandie in reply to Dinkie]

why didnt I find this comfort before I am so much brighter thankyou Your words are more beneficial than any drug I think I you have been a very independent it is so hard to ask for help You are not perceived as disabled with FM or arthritis especially hands Walk a short way in a sufferers shoes and tell them its not so I say to anyone not affected by this but it cant run your life but it is respected by me

[Dinkie in reply to arpinsandie]

glad to be of service - chin up and onwards and upwards

promise never to feel so alone again - just pop on here day or night and someone will be around to respond.

[arpinsandie in reply to Dinkie]

Yes I do promise you all Should of done this ages ago

[ukgospeldiva in reply to arpinsandie]

Hello there can I join in Sandie? I was diagnosed 2 years after an RTA with FM + 4 years after RTA I was diagnosed with IBS. I had been diagnosed with osteoarthritis,polymyalgia rhumatica and after a 10 year battle to get it acknowledge, Lupus 2 weeks ago.

You ask what is the point of having your pain killers changed when you maybe have 15-30 years to go or less like all of us we never know right?

I want you to reconsider this based upon the "quality of life" you have and how you feel that you are Debbie Downer?

I was on co-codamol, dihydracodine, tramadol plus usual 1 gram of paracetamol x4 daily?

Each pain killers I tried lasted this long or that long. 1 year or ten months or 5 months. I asked for a referral to a 'pain clinic' and was seen by a nurse specialist who said this: 'why' on earth has your GP NOT put you on MST Morphine'?

I was in Shropshire then and my GP was a bit 'aloof'?

She put me on slow-release MST morphine 30mgx b/d and It was REVOLUTIONARY. I had no side effects but best of all, because it's 'timed' you only get a strict but constant measured amount of pain killers that stops me becoming 'cover use'​ to the Morphine and unlike oramorph, again, because it's 'timed' those side effects of the liquid form- constipation for instance or slowing of breathing just NEVER happen and I'm Asthmatic?

But my life completely flipped over from crawling around the house, not sleeping at night, not wanting to get out of bed, uncontrollable agony, fight to keep awake, braining that sounded like I had lots the plot to- Functioning. I could START to live a life. I could do some house chores, could plan to go food shopping,could see my sister or best friend. Then I started to challenge it all. I joined 2 choirs- , Oxford Gospel Choir and WOAPA (West Oxon Performing Arts,) and a spin off from them of a group of us learning Handles Messiah' to perform this with the 'Big Choir' over 2000 of us at the Royal Albert Hall this November. I have decided to pursue my musical career that had been put on hold. I plan later this summer to do a new demo CD for gaining backing or lead singer roll.

I know that my recent diagnosis of LUPUS means I know will be looking at possibly chemo. But I looked up famous people who have Lupus and amongst many actors were the singer songwriter SEAL, the late Micheal Jackson, soul r+b singer Oleta Adams and even Lady Gaga! So I'm in good company​?

You owe it to yourself to put yourself forward as a priority. Why don't you deserve some Quality of life in your mature years? Why should you be a 'sacrificial lamb'? Why be a Marter on the Alter of obsecurity?

Why should you settle for less than your entitlement?

Please reconsider your position and request an appointment to the pain clinic near you and talk to your GP about Mst slow-release Morphine.

You won't feel in the way of family members, you won't be so depressed, you won't cry out in frustration and agony. You will get better sleep hygeine and that, will lessen the fibro flares.

You are L'Oreal and You are WORTH IT! -Hellen Mirran.

X

[arpinsandie in reply to ukgospeldiva]

hi there you are more than welcome to join in Wow what an amazing caterpillar to butterfly you are its always when you sit and contemplate what you want to do and what you cant you realise there are so many remedies for so many ailments you must get it right one day I suppose I had become complacent but reading your transformation I feel empowered enough to say hey doc listen to this lol Everyone is a story its up to us to make it as special as we can Its time for me to lift up the rock I crawled under and do something with my time after all age is just a number The word age is tiny but it homes lots of things under its umbrella I'm sure I will find my niche sadly it wont be singing I will keep you posted how I get on with a referral for Pain Clinic. Kindest regards to you and thankyou so very much

[ukgospeldiva in reply to arpinsandie]

If you get a chance to go onto one of the music sites like Spotify or Deezer ,YouTube look up 'Vicki Winnans- Shake Yourself Loose' I'm learning her part but appropriate?x

[Ccupcakes in reply to Dinkie]

Wax dips are lovely aren't they? My daughter trained as a Beauty Therapist and she used to do these for me a long time ago, closest I get these days is the washing up!

[Dinkie in reply to Ccupcakes]

ooh yes wonderful to be pampered. Washing up really doesn't have the same appeal does it

[arpinsandie in reply to Ccupcakes]

I trouble with wax dips - you have to come out of them I could stay for hours

[Dinkie in reply to arpinsandie]

You would end up as an exhibit in Madam Tussauds

[arpinsandie in reply to Dinkie]

At times I do look and sound like something from the chamber of horrors 🌝

[Ccupcakes in reply to arpinsandie]

Wouldn't it be great if there was something along the lines of a Turkish bath, but with scented Wax!! The whole body experience!

Madam Tussauds here I come !

[Creativeness1]

Hi arpindande

Welcome to our forum you will find lots of useful information on the home page and in the pinned post so please do take a look you will find a lot of friendly helpful people in similar situations. So please do feel free to share your experiences and thoughts will others. We are here to support as best we can. The following website also has a lot of useful information and research.

fmauk.org

We hope you will found this site a good experience and that you meet others like you.

FMAUK volunteer

[arpinsandie in reply to Creativeness1]

Thank you so much already replied to some wonderful people very understanding. Its like a breath of fresh air This is better than pills

[Ccupcakes]

Hello Sandie and welcome

As Dinkie says, we're a friendly bunch, we laugh a lot and cry a lot, and do our best to support each other in our spoony madness ( though some of us apparently have ladles and not spoons)!!

I also have osteo as well, neck, shoulders, ankles, feet, wrists, fingers , spine and both hips etc.

It's difficult to separate the pain out - usually I go for joints as osteo and therefore painkillers and anywhere else- fibro and therefore cry! No really, warmth helps, we all use heatpads and cooling jel, magnesium oil, Capsaicin cream, and anything else that we've come across that helps, if your fibro-mite is ten years old then you can probably give us some hints too!

The mother shop is useful and so are our mods ( don't tell them I said so !) They're the best.

Look forward to chatting to you , we're always around, even in the middle of the night sometimes!

Cloud hugs

Wendy xx

[arpinsandie in reply to Ccupcakes]

hi there Wendy Do you know I was beginning to think that all of us lovely people were hiding somewhere and I find I'm right you are all here partying What a relief this is as solitude and isolation can become your friends but not ones that are the best Over time I have had to become friends with this lodger who squats in me and pays no rent just zaps my energy and in accepting it have relaxed and stopped being stupid enough to overload myself I found a good cream like an anti-inflammatory it was a herbal one then it was discontinued!! I changed my mattress lighter duvet but still very stiff I cant use anything gluey stuff for dry eyes it all ends up running down my face to many expletives Ah well today was a marvellous day. I found the party Cheers fellow lovely people So great to be able to talk about everything that has been frowned upon.

[arpinsandie]

Thankyou so much I really feel a weight has been lifted I try hard not to get down but I'm not superhuman At least now I can chat without feeling that the person doesn't believe me or I'm boring them Take good care

[jbgood7]

Hi Sandie

I got the same condition

And found that for a few quid a month I have concocted a recipefor the pain 1tbsp of turmeric 1to speak ginger and a pinch of black pepper in a litre of water boil and simmer for ten minutes cool and add honey to taste drink half a cup first thing in the morning on a empty stomach adding gelatine to the mixture also helps to protect your joints by restoration of collagen replacement?

Sounds nuts I know that

But I have been using it for past few weeks and foundthat I forgot about the pain

Mobility seems better

Hey the whole lot less than a fiver and Relief! !??

Give it a go shove extra turmeric in your food

Make tea or smoothies

with it What makes you feel better cannot hurt

Sod them codeine pills

No good for headaches

And they will give you vertigo

All the best

John x

[arpinsandie]

I did pick up a recipe similar to yours from Pinterest but memory being really bad some days forgot until you just reminded me Yes I will try it I would eat stinging nettles some days to relieve the pain I am sure it couldn't be as bad My worst time is the stiffness in my hips especially first thing and a dreadful feeling that my head is too heavy for my body Whoever designed this vile illness wasn't human I don't like brainfog either I will keep you posted on my progress with your turmeric tonic Many thanks. keep well

[jbgood7 in reply to arpinsandie]

Some say beating your self with the stinging nettles will give you relief but not for me

Soup made from them with turmeric?

How about bone marrow broth with nettles turmeric

ME nuts going now

[arpinsandie in reply to jbgood7]

think I'm losing the plot or broadening your recipe I'm going to start it this week I will be sending a 👍 or a 👎 I'm hoping I like it Leaving nettles alone for now Gentle hug for you

[arpinsandie]

just thinking perhaps with extra gelatine this turmeric tonic could be made into a savoury or sweet jelly (with added honey) looking forward to trying it

[TheAuthor]

Hi arpinsandie

I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance.

I am so truly sorry that your family and friends are not that understanding of Fibro, and I have pasted you a link to some booklets that you could print off for them to read:

fmauk.org/information-packs...

I want to sincerely wish you all the best of luck and please take care of yourself my friend.

All my hopes and dreams for you

Ken

[arpinsandie in reply to TheAuthor]

hi ken that is so good of you and it is nice to know I can now talk about it What people chose not to know about its their fear of what they don't understand is hard on,the sufferer and strains relationships I'm sad I cant talk to my daughter I wished I had of spoken to my mum also a sufferer for many years I am guilty of thinking she played on her illness but now its happening to me Is it hereditary? I am going to try my best to follow any advice and tips here Its good to know I have found new friends I feel at home already

[TheAuthor in reply to arpinsandie]

Hi again arpinsandie

There is evidence to say Fibro could be hereditary and *MedicineNet says:

*Increasing evidence supports a strong genetic component to fibromyalgia. Siblings, parents, and children of a person with fibromyalgia are eight times more likely to have fibromyalgia than those who have no relatives with the condition. There are several genes that have been suspected to play a role in fibromyalgia.18 Jul 2016

I truly believe that my mum had Fibro although she was never diagnosed with it. She was ill most of her life. I really am so genuinely sorry that you cannot talk to your daughter about it my friend. I want to truyl wish you all the best.

All my hopes and dreams for you

Ken

[jbgood7]

Hey Sandie how's it going with the Tumeric ginger ect?

Still fxxking working for me haven't killed anyone or myself yet !

If you want to ask quack for pain killers try to get

Dipipanone 30mg and cyclizene 10mg

They are addictive but easier to get off of the shite msg

Trust me

They might not give it to you because of the cost £272 per 50

But let me know how you are coming along with the turmeric

X