I have Fibromyalgia - Ask me anything

[clairethewitch70]

I was diagnosed around 2006. Willing to answer questions.

Good basic info here.

www.nhs.uk/conditions/fibromyalgia/

Wolfie - have you been referred to a pain management service? If not see if you can ask your GP. Previously Rheumatologists would see fibro patients, but that is no longer the case, at least in my area.

I don’t have fibromyalgia but I have chronic pain - the pain team drive me up the wall so commiserations! your conditions sound tough, glad you’ve got PIP, the more I hear about it the angrier I get.

As an aside, I know it’s really annoying when people recommend drugs and things but I was prescribed nortriptaline by a very lovely nurse instead of amitryptaline. It has less of a sedating effect - I couldn’t get on with pregabalin or gabapentin but I found this does help. More so when I try to stop taking it! Sorry for the derail but it’s worth bearing in mind if anyone is at the beginning of pain medication trying out.

@MarieKondo - I spend hours a day on a laptop, working --mumsnetting-. It has no affect on me apart from sucking all my time away.
In my experience, there are two types of sufferers of fibro - please don't flame me for this, I have met lots of people on and offline with this condition. Type 1 - tries to learn as much as they can about Fibro. Makes lifestyle changes such as pacing, trying small amounts of exercise. Listening to Dr's suggestions. Tries to get out in the fresh air as much as possible. Fighting it, even if you have to get out with crutches or a stick or wheelchair.
Type 2 - diagnosis is the end of life as they know it. Can't do this that or the other in case they flare. Can't exercise, saying the Dr's want me to exercise? are they serious. I'm ill.
Both the same journey, but to a different destination. PMA. As I said my observation only and I hope I have not offended anyone.

@wolfiefan - you have the right mental attitude. You can fight this. It is OK to rest, I do. I am a stubborn mare too.

@Ucangourownwoo - I tried nortryptylline on pain clinic suggestion but it didn't really help.But thanks for the flowers. Sorry you have chronic pain - it is shit isn't it.

for all the fibromites and chronic pain sufferers and for their families and carers as they will need it.

I’ve seen a rheumatologist. But privately. Quick diagnosis and off you go.
What lovely people you all are and what an informative thread. Off to bed now.
Sleeping is another issue!

@clairethewitch70 thank you for that information. She was 17 when she had her first DC and also had pre-eclampsia, he was born at 35 weeks. She went from a size 8 to 14 after his birth. This thread is so helpful and I am going to read it again fully tomorrow so I can try and help her.

I'm so pleased to find this thread! Thanks op. May I ask how long it took you to get a diagnosis? My symptoms are identical to fibromialgia and cfs. I finally pulled up my big girl pants and visited my lovely doctor to get to the bottom of it. I did a half arse attempt a year ago and my bariatric team got my bloods tested for deficiancys etc but Nothing showed up and I gave up thinking they would just think I'm nuts. My main symptoms is extreme tiredness like I'm coming down with the flu or a nasty bug all the time, constant migraines, regular pain like hot throbbing muscles. Stiff joints mainly in my hands sometimes my husband has to undue my coat or help lace up my trainers. Constant pins and needles in my hands and feet. Waves of nausea which have already been investigated with a camera down the throat and I got told it was probably anxiety. I really struggle with sleeping it just doesn't happen and if I'm lucky to fall asleep at 3/4am it's a light sleep. I just feel so fed up with it all so it's nice to hear other people's story's. So I've got a different blood test booked tomorrow I'm guessing it's to rule out issues and another Drs app next week so she can decide who to refer me too. Wow that was quite a tangent sorry

@Wolfiefan - do you have any sleep issues?

@AugustRose. Has your sister been assessed by a SW from the council. They may be able to assist with rail and risers which may help. Sounds like she needs a stairlift but I don't think council provides that. She may need to purchase one.

Just thought of one of my fibro essentials. A motorised bed that sits you up. Essential on days when DH can't help me. Got mine from Ikea of all places, several years ago. Definately would replace it when needs be. On old bed I had risers that went under the legs, which made the bed higher. And a toilet seat raised thing that was so hard to keep clean I gave it back. Even though I live in a bungalow I have a flight of steps from and back and the council put hand rails on them for me. Unfortunately I can't get up and down them any more so DH drives the car around the back, onto the patio and I go out patio door, avoiding steps altogether.

Laptop dying, me too so off to bed. Answer anymore question s in the morning

I was misdiagnosed with it for years. It turned out the chronic pain and fatigue were part of Ehlers Danlos Syndrome hypermobility type. I am constantly getting tendinitis in my wrists and ankles, sprains, lower back and neck pain all just from daily living. I have skin that bruises and breaks easily, internal organs that are ‘bag shaped’ ie bladder, lungs that are big and floppy. I have constipation due to slow transit time and painkillers and anaesthetics don’t work well should I need them. I was diagnosed at the National Orthopaedic Hospital in Stanmore and the consultant told me many people who have EDS are misdiagnosed with fibro.

Hi Claire, I have had fibro, alongside a whole bagful of other goodies since childhood. One thing I have found is that many people dx with Fibro also have either SEN DC, or something like ADHD or ASD themselves. (I have ADHD, & possibly ASD, only dx when both DC, who are dx ASD were being assessed) Given that Fibro is largely a stress-related condition, it makes perfect sense that those of us who spend a lifetime trying to fit in as a square peg into the round hole that is life (or support DC in that position to do so) are under constant stress & anxiety, hence pain. I notice this in myself & both my DC. As well as being un dx ADHD, I also grew up in a house of violent alcoholic parents who threw me out at 16 to fend for myself. I sunk into alcoholism myself for a few years but managed to pull myself back & sort my life out. Married ex, who turned out to be a controlling bully. We finally divorced after 10 years, this coincided with moving house & losing my mother. I have also spent every minute stressed out & fighting for my DC since they were born.

I agree 100% with your 2 types of people who have Fibro. You see it all the time on the Fibro groups. It can be such a pity party it brings you down. I prefer to make the best of a bad hand lol. I have too much to do for my kids to waste time feeling sorry for myself!

Bertie

Any family members good with sewing, or otherwise a seamstress could help with your coat.

Ask them to sew Velcro onto both sides of your coat near the buttons and buttonholes. Done well, it will be invisible.
They can sew the buttons themselves onto the top of the buttonholes so it looks done up, even though it will really be held by the velcro.

Shoelaces, there are several different sorts of elasticated shoelaces you can get which convert a lace-up shoe into one you just slip on. Try Amazon, ebay etc.
This explains some of the different types.
nicershoes.com/best-no-tie-shoelaces-reviewed/

Skechers shoes are very light to wear, but not cheap.

I have fibromyalgia and I’m on desiccated thyroid meds, Armour thyroid. I get it on the NHS, my consultant asked the GP to prescribe it. My fibromyalgia is still as awful as pp describe though. I thought Armour would help too but it’s not made a scrap of difference unfortunately.

Why do they treat your thyroid with a really low dose of levo, when you have all these symptoms and your tsh is still so high? Did you try a higher dose already and it didn't make a difference? What do you feel like when your tsh is suppressed or very low, and your t4 and t3 are high in range? Have you ever seen a consultant who specialises in thyroid in case something unusual is going on and you would be better treated with t3 for example?

MissTook, I'm sorry armour didn't help. I found my hypothyroidism to be the most depressing and badly treated condition. I was left with tsh under 5 on 100mg of levo, in great pain with brain fog. I only needed an extra 25mg to get my tsh suppressed and many of the symptoms to go completely. I am still really angry about how my gp was happy to leave me in that state and call it fibro. Not all fibro is thyroid related (ehlers danloss is another really common misdiagnosis, also b12 deficiency and vit d deficiency) but I don't understand how anyone can fob someone off with fibro as a diagnosis without actually sorting out their thyroid first. I swear it's misogyny in medicine. 'Women's problems'

Mousewithascarf sorry to jump on I just wanted to ask you a question if that’s ok? Several people have told me I have hyper mobility but I’ve been left with nothing? No pain relief or pysio. Is there anything in particular that helps you? Some days I’m in agony.

Moving ... weirdly most of the people I know with EDS also have ASD. I don't know if there is a genetic link? So in their case, and I do get what you are saying about anxiety etc, but in their cases it was the hypermobility causing the pain. I know from my sister though (asd) that she seems to feel all pain more - like there is no distinction. A dislocated shoulder and a bumped knee hold equal, high, levels of pain for her. Her pain receptors seem set to a constant high level.

Selfishsister try Pilates, it can help.

Miss took have you had your vitamin d levels tested? If they are low you can feel terrible and in awful pain.

Hi op. Thanks for starting this thread. I also have fibromyalgia and my family do not understand it at all.
My dad rings me daily and he often says to me " and today's illness is?? " like it's some sort of joke, really upsets me.

I am 41 this week, was diagnosed in November 2017 after years of suffering.
I was diagnosed with severe sciatica in 2005 and just struggled on. After a very traumatic event in 2014 all of my fibromyalgia symptoms started appearing.
My pain is all back/legs related aswell as my wrists and hands. I have the worst insomnia, frequent headaches, brain fog and am sensitive to too many things to list.
It's a very real condition but have met with several doctors over the years who have suggested that it's all in the mind.

Thankfully my own lovely GP is amazing and listens to me regarding what meds I am
researching etc and I'm very aware of what works and what doesn't.

Along with the fibro i also have OCD and Bi Polar ( diagnosed November 2016 ) and anxiety/PTSD stemming from the events in 2014.
I take lots of medication and battle on daily.
I don't work.

Am sad to see so many of us suffering but also glad of the support.
It's a very isolating condition.

selfishsister the things that help
me are not doing anything involving repetitive actions for long such as typing, using scissors, gym machinery (in fact gyms are out for me as have had too many injuries using the equipment). Wearing supportive shoes or boots. Walking regularly. The main thing is to strengthen the muscles around joints but this needs to be done without over extending joints along the way. It would be useful to be referred to a physio dept so they can help you strengthen muscles safely. Accepting that your muscles have to work twice as hard as someone without hyper mobility to support your body and that you need to try factor in early nights, rest wherever possible. No idea where you live but the National orthopaedic hospital in Stanmore are brilliant. I wished I lived near enough to go to their hyper mobility clinic. But either way I’d ask your gp for a physio referral and perhaps occupational health who can advise about joint management and the best way to tackle the things you need to do in the least painful way.

@Mousewithascarf - I think hypermobility syndromes share a lot of common symptoms. Do you think you have Fibro AND EDS?

@Movingthisyeardefinately - Interesting observation - my youngest DS has specific learning difficulties and school wanted him assessed further which I declined, but at the time Aspergers was being mentioned. Glad it is not only me that noticed two types of fibromites.

@Bertiebitch32 - How long to get a diagnosis? About 3 years I think, as I was ill from about 2003 until diagnosis in 2006. Sounds like it could be fibro.

Something I have just remembered I was diagnosed with Yuppie flu in the late 1980's in my teens. Which now is ME.

@BlankTimes - I swear by Earth Spirit sandals which have contoured padded insoles. I even have a pair as my slippers. Also I wear the shoes that are flat ballerina type but with an elastic bar across so they don't slip off. I can put those on with no help.

Ps- op I'm glad it's you who posted.
I remember being on a fibromyalgia thread a while back and you were talking about which books have helped you and I asked you the names of them and you kindly told me. I promptly forgot 😊

If you are able to- could you recommend me them again, thank you x

@MissTook - I have been denied Armour on NHS, not sure if it is because I live in Wales. Sorry you are still suffering

@ISDads - when I take an higher dose of levo, I get palpitations and episodes of SVT, so Drs keep it at that level. I saw a Consultant for several years when I was first diagnosed with postpartum thyroiditis. After a year with thyroxine was stopped, but my condition came back. They tested thyroid antibodies which we high so autoimmune thyroiditis was diagnosed. Was also monitored throughout pregnancy with DS2 then discharged postnatally. Have also seen an endocrinologist privately when it was suspected I had encephalitis due to thyroid issues (I didn't)

Another Fibromylagia sufferer joining the thread. No questions for you OP, but thanks for starting this thread.

@Zoflorabore - that is mean of your dad :( The back and leg pain could be due to the sciatica issues. I have prolapsed disc, stenosis and severe arthritis in spine and I think my leg issues stem from this. It is NOT all in the mind, if so how can so many people with a positive mindset and fighting this illness be so ill. This makes me so angry. Interesting you say it is stress related, this I hear so often. Glad you have a supportive GP it makes all the difference. Re: mental health I have OCD too and BPD.

The books - Avoid Fibromyalgia for Dummies, too Americanised.

Foods that help the battles against Fibromylagia is good IF you have someone to prepare the meals for you and they can be complex and exhausting to make.
BMA Bad Back book - really good advice if you have problems in this area.
How your mind can heal your body - David Hamilton - interesting model but didn't work for me. Involves visualizing your body healing itself.
My most used book is The Fibromyalgia Handbook by Harris McIlwain. Good advice. He is a rheumatologist.