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Fibromyalgia Action UK
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Newly diagnosed

Hi, I have been diagnosed with fibromyalgia a couple of days ago.

I'm a night time care assistant and am worried about if I can continue to do my job as my legs really hurt.

I'm on gabpentin and taking co-codamol but still in pain.

I'm working tomorrow night, any help would be gratefully received.

Thanks x

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Hi it look like you need something strong if the medicine not working hun

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Thank you. The pain in my calf and knees and thighs is this normal for fibromyalgia?

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Yes it is the pain can be in one area or all over the body which I have I can’t pin point where the pain is with me

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Sorry to hear that, hope you feel better soon.

Will I always be in pain?

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That depends hun I can’t say everyone is different

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Am on found out this week I have fb so am new to all this still trying to get my head around it all

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Oh I'm sure talking on here helps.

I am a bit overwhelmed as reading so much to find out more. Information overload.

Just hoping I can get through my shift.

What is fb? Xx

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It’s short for fibromyalgia lol xx

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😂 of course! Durr. Going to bed to read now.

Here if you need to talk x

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Actually FB is usually used to mean Facebook and FM or FMS is the shortened version of Fibromyalgia or Fibro is used too 🙂

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just a small clarification - if someone only has pain in the upper half of their body for example then its likely not fibro and should be talking to GP about possible other conditions like CRPS. Fibromyalgia is typically pain in all 4 quadrants of the body while it can focus on parts of the body from time to time and this is affected by the environment and our behaviour.

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I'm afraid they are. I also suffer in this way. Some would have us believe that it only affects the upper body but this isn't so. I suffer horrible burning in legs on occasions too.

For pain in your legs, all I can suggest is something like Deep Freeze Gel. You could increase the main meds but I found these too sedating.

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Pain in my legs has been bad last few days. I swear someone has an effigy doll if me and is sticking pins in it.

Have you tried Epsom salts in a bath ? Soak in it for 20 plus minutes if you can. You can make a magnesium spray by dissolving magnesium flakes into warm water until you have a saturated solution. Pour into a spray bottle. Can sting your skin a bit but helps with the pain, I've found.

I use Salonpas patches I buy online and you can try anything like Deep Heat.

I've found there's no one thing that stops the pain; it's a matter of trying lots of small things.

I've also noticed different foods trigger flares. Sugar definitely and I'm now thinking anything that contains flour, even though I use gluten free. Made some gluten free scones today, ate two and the pain really flared up over the next few hours. Just subsiding slightly now with painkillers and Salonpas stuck on me. :(

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Thank you, will try those remedies. Hopefully they will help me get through my shift.

Think I may start a food and pain diary.

Thanks for your help xx

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Hi 06hollyberry great tip about the mag. Spray, I always use Epsom salts in the bath but never made a spray with it, I buy the mag spray which is quite expensive , about how much mag do you put per spray.

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I boiled water to sterilise it, then cooled it to a little above blood temperature. Feels comfortably warm when you dip a finger in it.

I then started to pour in magnesium flakes, stirring constantly. The flakes dissolve into the water and keep adding slowly until no more can be absorbed. You'll get just a few flakes dropping to the bottom of your solution. When it's reached this stage the water is saturated with magnesium. I cooled it and poured it into a spray bottle ( I used an empty magnesium spray bottle)

It used about 1/4 of the bag of magnesium flakes I bought for about £4 so much cheaper than buying ready made.

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Thanks for that, you say about 1/4 bag of mag, is that a kg bag, and also how much water? Sorry I'm a bit thick in the morning LOL 😃

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I can't remember the weight of the bag. Start with your spray bottle--- if it says 200ml on outside, start with just less than this amount of water and add the flakes until you reach a saturated solution. It's making the solution to that strength that matters, rather than weighing anything. It's really easy to do and you can go wrong.

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Ok , thanks again 👍😃

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Welcome to FMAUK ! :)

You’ve landed in the right place to talk all things Fibromyalgia and you should find a great site for online support too! :)

Regarding Gabapentin for md personally it didn’t help my pain and it wasn’t until I was put on Pregabalin before I felt any relief with Tramadol SR too. Still get pain so not pain free but just about manageable to cope with.

Sound like you may need a medication review and/or a pain clinic referral if the GP cannot prescribe the right combination to help your pain. Fibromyalgia is challenging to say the least but as well as medication other therapies and coping mechanisms should be used alongside pain relief ie gentle exercise, stretching (progressive muscle relaxation), mindfulness /meditation, stress reduction, complementary therapies, listening to your body and other forms of pain relief (TENS, Muscle Creams) etc. Finding the right combination of all these things or some of them is usually considered best at managing symptoms.

Do you manage to get quality sleep in the daytime? Nights were bad for me personally when I used to work. With Fibromyalgia even with sleeping at night members share stories of poor sleep and Fibro is known for the lacking non refreshing sleep impacting on symptoms. Sorry to say but night work may not be helping if sleep is poor. I understand this might be the only time you can work and would also suggest speaking with GP about any problems sleeping too if there is any. Says me who is awake in the middle of the night 😂😂 the irony but nights awake are usually rare occurrence 🙂

Regarding work, are they aware of your condition you may be able to look into your rights to get reasonable adjustments at work to make your work life easier also hopefully reducing symptoms a little. Let me know if you want a link to the FMAUK Benefits Advisor to discuss work related issues and I’ll reply with it🙂

As a newbie I’ve noticed you haven’t locked your post to this community and if you do this will probably generate more replies. How to do this if you wish to is in the link below;

healthunlocked.com/fibromya...

Hope this helps

Emma :)

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Hi I work full time had Fibromyalgia for over 10 years. I have found the combination of pregablin 225mg twice a day and duloxetine 120mg once a day have made a difference in my levels of pain and I also take codine during the day also. I use lidocaine patches at night and have found some relief. Talk to your employer regarding your duties as Fibro is regarded as a disability under the Equality Act. You can adapt your working environment to ensure you are able to continue! Hope all goes well sending love and peace 💕✌

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Hi, just read your post. I thought fibro was only classed has disability in the USA. Is it now classed in the Uk also? Hope so 😀

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Fibromyalgia is not classed as a disability in the UK as some people are not significantly disabled with it and it more a long term condition they manage. A petition raised over 100K for this to be changed however it didn’t happen. I expect the FMAUK Chair will be able to explain more about why this was rejected.

However the member you replied to was quite right that it is covered by Equality Act and employees with Fibro have rights.

Hope this makes sense

Emma ;)

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I thought so. Thank you.

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It is now classed as a diability.

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Yes!!! It is a disability in UK. My GP is excellent and is so on the ball with Fibro 😊my employer also has said under Equality Act I will be entitled to have reasonable adjustments to my working environment and duties (I also teach legislation as part of the curriculum in FE). Hope you can get some advice and support from your GP. Sensing love and peace 💕✌

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I was told it wasn't. I remember the petition to change it. Perhaps once more is know about fibro it will in the future.

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desquinn will confirm about this it is not classed as a disability but is covered by Equality Act and you have employers rights like anyone else plus the DWP have stated in the past it recognised Fibromyalgia. Usandthem This is my understanding and as I say the Chair of the Charity FMAUK supporting the FIbromyalgia community here in the UK will be able to correct any parts that I may have got wrong but this is the best answer to my current knowledge. :)

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fibro is not a disability - this post may help explain: healthunlocked.com/fibromya...

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no its not a disability and under the current regime it will not be. There are very few conditions that automatically equate to being a disability e.g. being deaf. What a person can do or not is what is used to measure ability.

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See desquinn 's reply and link to explain further :) Mushmoo I tagged you as you may find the post he has given interesting maybe too :)

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Thank you for the information. I didn't know about employees able to have changes to help with work. I'm lucky my boss is understanding and made one simple change which helps me loads. Anything to help keep us a work and independent is a good thing.

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No problem yes you can speak to your boss about reasonable adjustments and your rights, hope this helps. If you need to speak with FMAUK Benefits Advisor here's the link with all contact details (tel & email etc) and also other websites that may be of interest;

healthunlocked.com/fibromya...

Emma :)

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Thank you

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Thanks guys! Sorry about this i am just going on my GPs advice, he is really forward thinking and has been a brilliant support for me but I trust your word and advice, sorry for the confusion caused!!!! Peace and love 💕✌

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You’re welcome - no need to apologise just wanted to ensure you get the right information :)

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Thank you for your help x

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Hi hun- I,m afraid everywhere we have muscles we can hurt- if you are moving and handling you must speak to your line manager about stopping this and get support from your gp and consultant for this. employers MUSt make adjustments for employees where they have any disabilities, a lot dont want to spend their profits on that! Is there a hoist where you work? Working in the type of employment you do there are numerous jobs you can revert to that dont involve lifting ANY patients except in an extreme emergency, my younger sister works in a famous nursing home environment as a housekeeper, she might be lucky because her boss has Fibro and my sister finds stairs a nightmare, she,s been given permission to use the stairlift, something so simple has helped her , as for pain relief maybe discuss with gp for a normal acceptable analgesic and be allowed to add something else when you are bad/

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Thank you for your help. Yes I do use hoists but only as a double. I am going to talk to my boss though as I sometimes have to to two nights in a row which I know I won't be able to do. Hopefully they will help me or I will have to leave and I'm sure they don't want to loose me. We do have a lift so I will be using that instead of the stairs in future.

Thank you so much for your help xx

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The leg pain makes me wonder if you have neuropathy? I would talk to your doctor about that and if you do have neuropathy talk to him about Pre-Dx.com if this would be right for you. I was diagnosed with fibromyalgia and CFS in 94. A ton of other diagnosis over the years and about 4-5yrs ago was diagnosed with neuropathy (I do not have diabetes). So I have been dealing with the leg pains especially in the evening it is worse. I don’t know why. 🤷🏼‍♀️At my last appointment with my doctor she told me about the Pre-Dx supplements so after pay day I ordered them and have been taking them 4-5 days now. It hasn’t helped with the pain yet but I have noticed my mood has been not as depressed. I don’t know if it is due to the Pre-Dx or I’m just having a happier period. So I’m going to give it the 60days to see if it makes a differences. I’m not promoting it nor selling them. I’m just telling you about it and let you and your doctor decide if it is right for you. I have a gene mutation that prevents my body to break down vit.E which I have been taking for years, so it can cross the blood brain barrier. It effects me in other ways obviously 🙄 memory because I don’t remember what all the problems it caused me.

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Hi try play it by ear the now everyone is different and it is early doors for you some people can work and some cannot if you get worse and cannot cope try ask for adaption at work etc see if work will try help you .Hope your meds help you and you can manage .as for the disability of fybromyligia you do get mixed opinions. But the DWP do give fybromyligia patients severe disability premium and does this means you are disabled? does it ? I do not know but if you get that and pip in my opinion you are disabled

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