Help: Hi everyone Iam so desperate to... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Hi everyone

Iam so desperate to speak to people with fibromyalgia I have suffered pain for years and have just been put on pain killers and told I have fibromyalgia but I’m still not sure this is what I have... I wondered if I could ask does stiffness come with this condition? If I sit just for five mins I can hardly move I get up like an old woman and can’t straighten my back and my legs are so so stiff and painful I also walk flat footed until I can bend my ankles again!! Does this sound right for this condition please? My arms hurt to move also!

29 Replies

Hi and welcome to the club none of us want to join. I’m afraid those symptoms do sound like fibro to me. Although fibro can be different for all of us many suffer the stiffness. I am crippled after 5 mins in the car.

Some of us can’t take prescription meds so have to rely on heat pads, tens machine, Epsom salt baths, gentle exercise, diet etc. It’s very much a case of trial and error to find what works for you. It may take a while to find the right medication combination to help you so don’t lose heart if the first ones don’t seem to work.

Have you had your vitamin D level checked as if you are low in vit D it can cause muscle aches and pains.

Don’t be afraid to ask any questions we really are a friendly bunch.

Denford in reply to Dinkie

Hi, yes Iam exactly the same if I sit for just five mins I totally stiffen up then get up like an 80 year old! You say diet? What did you mean by this is there certain foods that help? No ones tested me for vitamin d but I may just get some anyway! Can if affect your heart that you know of? I’ve recently had a 48 hr monitor fitted and am awaiting results?

Dinkie in reply to Denford

Ask for a blood test as taking too much vitD is as bad as too little. The over the counter vit D is not strong enough if you are low. MyGP had me on 20,000iu every other day.

Diet I maintain a processed food and refined sugar free diet. If I stray from this and occasionally we all fall off the wagon😂 for special occasions then I really pay for it. It’s a case of just playing around with things until you find what works for you.

Jedsf84 in reply to Dinkie

Hi, I have been diagnosed with ehlers-danlos syndrome which has been managed well for years, but I've recently had a flare up of widespread pain that has got a tiny bit better with some new medication (I'm usually fairly medication free) so I'm signed off work and taking meds and waiting to be to see rheumatologist but the GPS are mentioning fibromyalgia.

Im sorry that you're going through this, any invisible illness is so hard to deal with because to the majority of people you look OK so it's hard for people to understand what you're going through. I wish you all the best and that you get some answers very soon.

Hello Denford. Yes, I have the pain and stiffness you are suffering from. I've had fibromyalgia for years. So it's possible you have it as well. Sorry to tell you that. Take care.

Hi Denford

I think one of my first symptoms was when I got out of bed it felt like I had broken my feet and ankles I would struggle to walk to the bathroom and to straighten up once I got going it eased I am actually flat footed so suffer quite a bit of foot and ankle pain, oh and don’t get me started on my arms!

Did they rule out everything else before diagnosing fibromyalgia?

I am sure lots of people here will be able to help you it’s a lovely friendly and understanding forum 🐼💜

Denford in reply to Panda1968

Hiya, I was sent to see a specialist as also been diagnosed with osteoarthritis and it was the specialist that said fibromyalgia, I was scared it was MS! Yesterday was probably my worst day even I was so stiff and so painful! I think o just find the whole thing very odd perhaps because I don’t understand it!!! If you don’t mind me asking how long have you ha d it and do you get other symptoms? Also does Fibro get worse or is it just good days and bad days? I’m terrified of not being able to work and pay my mortgage?! X

Panda1968 in reply to Denford

Hi Denford

I think I have had it a long time when I look back but only diagnosed 2 years it really varies, I have too many symptoms to list to be honest I would say i have good and bad I always struggle in the morning so I give myself enough time to get up and prepare for work I have gone part time now, would this be an option for you? I also get PIP it’s not a kings ransom but it helps. I was very open with my employers and mentioned that fibromyalgia is a recognised disability so you can’t just get rid of me lol l. I did provide the paperwork to back this up. I would say the most valuable lesson I have learnt is to pace myself and say no oh and to ask for help, I used to be so embarrassed but I don’t give a hoot now.

Hope this is of some help 🥰🐼

Hi Denford. It will take time to get your head around it. Essentially it comes down to symptom management and acceptance without despair. Hang in there. X

Hi Denford

I am sorry to hear of your diognosis and suffering.

I too have recently been diognosed.

I have been prescribed Dulaxitine... Not sure whether it will work or of the side effects. Will see.

If you dont mind me asking, what painkillers have you been prescribed? It will he interesting to see how you fare with them. Please let us know.


Denford in reply to smilingjane

Hiya thanks for your reply, I was prescribed Amitriptyline I’ve been taking for 6 weeks now and Iam sleeping every night now which is great I haven’t had a good night sleep in months!!!!😊

smilingjane in reply to Denford

Well that is amazing. Congratulations.

Long may in continue 😊


Welcome to the Fibromighty!

Yes, I get stiffness too, although my main symptoms are at my waist or below. Fibro hits folk differently, there is no 'one size fits all', which is one reason it is so difficult to diagnose.

Just as there are countless symptoms, there are also countless theories about what helps, some more likely than others, but if it works for you, stick with it. There are also many 'crackpot' therapies, ready to take your money for little or no benefit.

Exercise is important in moderation, don't overdo it or you will end up in a Fibro flare, which is nasty. Again, Can't give details as it differs between folk.

Medication is an issue. Some folk get relief from meds, others don't, and some become addicted and take more as the tablets become less effective.

Personally, I take very little, Ibuprofen for general pain, Voltarol gel on my knees, because at 72, they are in bad shape, and I have a few CoDydramol, which I only take in emergencies, when the pain is at 9 or10.

I hope this is of some help,

Cheers, Midori

Yes, you’ve definitely got Fibromyalgia. It’s horrible. I’ve suffered for around 10 years and was diagnosed in 2018. I’m so sorry you’re suffering. I’m currently at work and I’m aching all over today. Don’t give in though but at the same time always be fair to yourself. Sending love & a hug 🧡💚💜

Thanks so much for your reply! It is awful I feel like im going mad!! I’ve been like this for around 18months but have only just been told I have osteoarthritis and fibromyalgia, every day it seems a part of my body is hurting and the stiffness is so so bad!! I’ve heard it’s caused my trauma? I haven’t had any trauma so I don’t understand why I have it? Do you know any reasons why we have it please? Xx

My fibro was caused by the flu. Never had anything other than arthritis beforehand. Now I have fibro along with irritable bowel, tiredness like I never felt before and now high pressure in my brain and needing a stent or shunt and trigeminal neuralgia. No idea if the last 2 are related though

There are a few reasons why health professionals think people develop it. Can be trauma of some description like a car accident, ptsd or abuse. A infection or an injury. I’ve also heard it can be hereditary/genetic. Nobody really knows.

From my own personal journey and speaking with a previous physiotherapist who was specialised in helping people with Fibromyalgia, mine could have been caused by my job and my former marriage. My ex husband caused me a lot of emotional and mental anguish. Through therapy I know now that it was abuse. My job is very physically demanding and has put my body through it over the past 25 years. I still do the same job but I’ve had to learn my limits. I ended the marriage 2 and a bit years ago so that I could have a happier life. I’m now able to ask for help when I need it and be kinder to myself.

I’m so sorry you’re suffering. The aching and stiffness never improves much. It really knocks the stuffing out of you. Something really important to remember though...and this was told to me by my old two people with fibromyalgia suffer the same. It is different for everyone. Your fibro is yours and only you can deal with it how you need to. I’ve met many different degrees of sufferers and they all varied in what symptoms affected them most. One thing we all have in common though is how to learn to be our own best friend. I’m a big believer in self preservation and my biggest safety net is me. Trust you and trust your judgement when you’re having an off day/week/month or year! Don’t be afraid of putting yourself first.

If you ever need a chat I’m always here 💛💜❤️

That's so kind of you. I'm recently diagnosed and I'm having trouble being kind to myself. I struggle to except this. Your words are so true and lovely. Debs

It takes time to accept what you’ve got and a bit longer to learn to be kind to yourself. You’ll get there my lovely....don’t despair 💛🧡💚

Thankyou so much for your lovely reply. I'm so happy to have found you all x

Hi Denford, I'm so sorry but my main symptom other than pain is the stiffness after being asleep or sitting for a while. Horrible, painful stiffness, where I walk like an 90 year old instead of someone who is not quite 50.

Sorry you have this awful illness.

My doctor tested my vit b levels as if that is low it can cause similar pains

Hi, you say you've been diagnosed with osteoarthritis as well as fybro, me too, I think the stiffness could be your arthritis , do you take anything for the inflammation

Hi I was recently diagnosed myself, I'm struggling to actually come to terms with it. The pain is so awfal. And yes the stiffness is a big part of it. Me to if I sit and get up I feel so bad. I get stiffness in my ankles. My hands are often numb. I just sit and cry some days, I miss life before this pain so much. I'm still working with gp to get the right medication. I wish you well. I hope you get some relief. Take care Debs x

Hi Debs

The pain is awful and I the stiffness, I feel like the tin man most days if only a bit of oil would be the answer!

I have numbness in hands and fingers so know how you feel, it really does take time to process it all and trust me I have just sat and cried and said I can’t take the pain anymore so you are not ALONE when you feel like this. I am now on a cocktail of drugs which do help I took myself off them just to see if they made a difference what a mistake that was.

I am also under rheumatology and a Pain Management team but this was only after referral by my GP.

Panda 🐼🥰💜

Oh bless you.. It sounds so. Much like me. I cry most days for the life I had. I know I have for to accept it. I am also under a pain management team, the fist phone call I cried the whole time. I am waiting for my 2nd call. I'm so glad to have found you all. Thankyou so so much for replying x

Your more than welcome I know when you have been so active it’s hard to accept and don’t worry I breakdown with every phone call because somehow when your telling someone it’s like a reality check and it hits me again, I know it’s not for everyone but have you tried meditation oh and heat pads are great lol 🐼🥰💜

Oh I will try heat pads. I find it hard to relax so I dnt think meditation would be for me. I'm on pregabalin and like you I stopped it and it was so bad, I'm know back on it. But I have gained weight and feel bloated a lot of the time. I find it hard and I worry about the weight xx thanku for the chat x

Morning Debs

I am 100 miles an hour person well more like 2 miles an hour now, it took me I would honestly say 6 months to train myself to do it, I was running out of cutlery to smash In sheer frustration lol.

Pregabalin, I think at one point was on 275 twice a day, I put on a stone in just under 3 weeks, I keep a calorie diary on my phone and I had not increased but the side effect is hunger I could literally hoover up the entire contents of every cupboard if I had not been disciplined so that was the main reason I came off it am now on 50 twice a day and have lost the stone and have not gained for nearly 3 months In fact lost a few more pounds and no increase in appetite in fact I have had the opposite I do not feel at all hungry which is strange. Anytime you fancy a chat just let me know a problem shared is a problem halved, your not alone in this blooming battle which feels more like a war 🐼💜 xx

Oh forgot to mention I take high levels of Vitamin D which has helped me as my body doesn’t store it I need to live in the Maldives to be fair 😂

Hello there. You have just described excatly what happens to me when I sit down. Sounds like fibo symptoms to me but I am sure you will havev many more symptoms that i have and others here have if you have fibo. Take care


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