Fibromyalgia

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I was given a diagnosis of fibromyalgia this afternoon. The rheumatologist also advised that they also suspect that I have lupus too and has ordered further blood test. I was provided with a contact number for a rheumatology nurse who I can call if I have any questions. However I don’t know where to start. Can anyone help to shed some light on fibromyalgia please....I think my head is spinning from today’s lengthy, exhausting hospital appointment and I’m now kicking myself for not asking questions during today’s appointment...if there’s is anyone out there who can advise me as to how this condition affects work, life, etc I would appreciate....I’m very reluctant to google..sorry if this is jumbled, thanks for your time x

I am anticipating a similar diagnosis myself as I have a lot of pain in a lot of places and they are running out of ideas. As far as I can see its a catch-all for GPs and actually means "lots of pain, no idea why" and for the rest of our lives anything we complain about will be "that's fibro for you!" Sorry to be so negative - if you have lupus too perhaps they will take you pretty seriously (and my GP practice sucks so that does colour my views). I don't think fibro is too scary to Google as I have looked and have seen much worse on other searches. Good luck!

Hi, i was diagnosed with fibromyalgia almost a year ago after suffering for a long time.

For me I've had sciatica since 2005 when my ds was 2 and the daily pain got worse and worse.
After a traumatic life event in 2014 my health deteriorated and I began to experience widespread pain, extreme fatigue, brain fog and headaches.

I knew it was fibromyalgia after stumbling across the word somewhere and reading up on it constantly. My doctor thankfully took me seriously ( lots of doctors do not believe in the condition ) and after tons of tests to eliminate everything else it was diagnosed by a private hospital but paid for by the NHS.

So for me, it's a constant pain in my lower back, left hip,knee and leg and an overwhelming tiredness that hardly goes away. I have lost friends because I simply cannot do what I used to to. Lots of my family do not understand and I've had to completely adjust my life.
Mornings are tough, I am very stiff. I've been on so many different medications, some have put weight on me ( I'm already a size 18 ) and others haven't done a thing.
I'm currently happy with my medication but going through an insomnia phase which is very common in fibro sufferers and am taking sleeping pills for a few weeks.

Any questions I would be happy to answer. It's a fluctuating condition and there are the so called "fibro flares" which happen when they want to. Pain intensifies and symptoms worsen. You just have to ride it out.

I was 40 in January and had a big night out planned then had a flare up and was in bed at 8pm crying into my chocolate!

I've had RA and OA for a couple of years and my Rheumatologist told me earlier this year I have Fibromyalgia. To be honest I haven't taken much notice as it just seemed like a lazy umbrella term for a range of symptoms. It also seems to be controversial as to whether it really is an illness. My fear would be that GPs write you off as having psychological symptoms when in fact there is some inflammatory disorder there.

Thank you everyone for taking the time to respond...I have been struggling with back and joint pain for several years. I had a disectomy at beginning of the year and my joint pain became unbearable. I also suffer with positional vertigo for the last eight years. I work full time (children’s services) which I thoroughly enjoy but it is very stressful. I may haves to consider reducing my hours. It involves a lot of travelling and report writing. I’m feeling like crap more days than not of late. Have just got in and have received a follow up with the rheumatology consultant for two weeks time along with another appointment for four months time....this is a bit of a worry given that I only saw them yesterday!!??....is this normal? I will call them on Monday to confirm. I’m currently on gabapentin and co codamol which doesn’t seem to be doing much apart from make me feel more tired...can’t tolerate anti inflammatory meds. Mornings are worse than ever due to the painful joints...any hints will be much appreciated...as you may of gathered,from my ramblings, I’m not feeling the most confident at the moment😩

We hear you and yes mornings are crap. I am 10 years post disc surgery and have pain every day. The best painkiller is paracetamol (the hospital will confirm this) - the other ones make you tired and spacey so you don't feel the pain so much. Take the full dose every day for a while and you might get a wee improvement. I might be wrong but I thought positional vertigo could be cured? I had balance problems for years and was misdiagnosed several times before they found the problem (so rare it doesn't have a name) and some simple exercises cured it. It comes back a bit so I still do them sometimes.

Well done for still working full-time. I slowly went more and more part-time and then left at 57 and took my private pension but I am guessing you are young so that's not an option.

Hang in there - it might get better once they decide on your exact diagnosis and hopefully better/more appropriate drugs.

Fibro is seen more as a mental health issue in the medical world and you should seek help from your GP as opposed to your rheumatologist. There is nothing a rheumatologist can do to relieve your symptoms, whereas a GP has access and knowledge to a wide range of medications and therapies.
Good luck and I hope you make a full recovery.

You could also ask about your local Pain Management Service. Ours are experts in Fibro but you'd need to be referred by your GP. They can't cure your pain, but they will help you to manage it.

I was diagnosed with severe/moderate fibro five years ago and still work full time, raise my daughter etc. It hurts but it’s not the end of life as we know it!

The clinical evidence shows that the most effective treatment is exercise and the evidence for meds is limited: www.ncbi.nlm.nih.gov/pubmed/27377815

IMO a lot of people don’t want to hear this and I found myself pushed down the meds, reduce your hours route. Slow and gradual is the key, but exercise has worked better for me than anything else.

I was diagnosed by a consultant at my hospital after lots of tests,nearly 2 yrs ago,after 4 yrs of spinel surgeries..I have been for every treatment offered to me including CBT..I have really good days then a week of really shit days.this week I haven't been able to leave the house.the fatigue is worse then iv ever had it,the low mood,the not wanting to go another day like it,the pain ontop of my constant sciatica pain,the list goes on.thank God I have a GP that listens to me but there is no support group near me and I have lost friends due to being in a low mood all the time and so up and day.i hope you get the support and help you all need x

I had never heard of fibromyalgia before I was diagnosed with it roughly 8 years ago. Fibromyalgia is simply a name for a set of symptoms. Basically so many people were going to doctors with the same set of symptoms that they had to give it a name to make it easier to deal with. You cannot test for it so a diagnosis should only be given once anything and everything else has been ruled out. The symptoms list is long so it is just a bit of a catch all term. Everyone who has it doesn't experience everything on the list but the most common indicators include chronic pain and fatigue. You can get a full symptoms and more info here www.nhs.uk/conditions/fibromyalgia/ like me you may recognise symptoms you didn't even think to report to the doctor. This is a chronic condition so you may have to manage it indefinitely I found acupuncture useful as I can't take medications maybe give it a go?

Thank you for taking the time to reply.I return to work tomorrow and am dreading it. I have booked my taxi as I find it difficult to drive. My manager is supportive and has emailed information about dwp things and adaptations which can be applied for. I feel overwhelmed as I know that sickness is not treated with sensitivity amongst the gossip mongers. How have people managed with work etc. I feel that managing my pain is hard enough, let alone having to explain to people. So far I are only spoken to my partner and our adult children about my diagnosis. But I don’t feel to confident enough to explain to others. I just don’t know what to do next, I want to get on with work and get rid of this bloody pain. Sorry as you can guess, I’m having a rough day😩

If it comes up just say you have a chronic illness. You don't have to go into specifics alternatively you could say you have chronic pain if you think that "illness" will just invite more questions. I tend to stay clear of saying chronic fatigue as people usually respond with "well, we're all tired aren't we?"

I feel your pain.it took 8 years of me going to the doctor before I was referred to a specialist and diagnosed with fibromyalgia. I had to reduce my hours at work.if you've had it more than 6 months it's classed as a disability and under the equality act and your employer needs to make reasonable adjustments to help you at work.mornjng stiffness is a real problem for me so I start work at 9.30. I've read every self help book going- pacing yourself is really important - don't do so much in one go you wipe yourself out totally the next day(I've done this many times), I have regular massages and acupuncture which helps, warm baths ease muscles and they say gentle exercise but that's easier said than done when you're in pain. There is a fibromyalgia support group on line you can register with who have some good advice. For me I know my energy levels are dropping quite quickly it feels like someone's pulled the plug. I have an agreement with work that if I feel like this I can leave early when possible. There are normally local support groups who meet up monthly for those with fibromyalgia. I'm not going to lie it can really get me down on bad days you need to see what helps you in particular. Big hugs

Thank you for your for your replies... I have been trying to manage my full time job... very stressful job dealing with people who are in need of ongoing support...I’m struggling with brain fog, pain in my joints, dodgy bowels and incontenence...I feel awful...so drained...I spent all of today typing reports and my hands are painful...I’m having a moan...have a gp appointment next weak, I feel so exhausted...is there anything I can take to help ? Sorry if I sound so negative... I need to work but I feel such a flop... I haven’t told my colleagues as I don’t know what to say... I feel so fed up and alone

Bless you I know how you feel- I tend to try and get through some of my worst work days by taking co codamol in the morning and through the day. Do your occupation health and HR department know?you need to let them know as when you're having a bad day there may be things they can do to help.

I type a lot of reports in my job - I'll be honest reports that may have taken me one day sometimes take me 3 days. I try and have a few short breaks at work and when I'm really stiff I sometimes stretch out my muscles in the disabled toilet which no one else uses.

It's no fun.I used to work full time but I just don't have the energy anymore and I'm just in the process of looking again at my finish times etc at work to try and prevent my energy crashing so badly I have to go sick from work. Is there anyway you could jiggle your hours? I definitely have a drop in energy after 3pm.

I get some very difficult days at work. Could you ask your GP to write a letter to your Occupation Health HR department of you don't know what to say?

Try keeping a diary throughout your working day - there may be a pattern you find with times of tiredness and poor concentration and you may be able to put little changes into help. You're not alone - it is very frustrating and the hardest thing is accepting you have limitations you didn't have before. Take care and pace yourself as best you can. There are some good local support groups that can help too

Hi celticmissey..l work from hom 1-2 days...like you, my job involves a great deal of report writing. I have to tend visits and meetings....I have not told my team members anything as they are not the most sympathetic people... I tend to keep out of the office as much as possible to avoid the general negative atmosphere in there..I really love my job and worked hard to get to this...most days I am so tired I could weep...I take co codamol but I don’t feel like it’s help....gabapentine helps for the nerve weakness but I can’t take them during the day as I drive... I used to be such a cheerful person now I am so miserable...I’m 53 years old but feel like I have a body of a 90 year old😩.... I will have some good days...sometime soon 🤞