ME / CFS / Fibro spoony thread

[notsurewhatshappening]

Safe space here for support and understanding- all welcome. I'm quite new to this so would be nice to chat (low energy levels permitting!).

I have a bad cold and sinusitis just now so feeling even more horrible than normal.

I take a vegan multivit, vitD high strength and calcium and magnesium. Over the years I’ve tried lots but nothing’s really worked.

Am also on tramadol for pain and duoxetine.

Hi I was wondering if I could ask you lovely
People with a ME diagnosis a question please. Have any of you been poorly with ME since childhood/teen? If so how have you managed into adulthood - have any of you had a partial recovery to be able to work?

My 17yo daughter has been poorly since age12 and is really struggling - I’m looking for hope xx

Hi,

I’ve been diagnosed with cfs for six years now. I think I’m past the worst, as I spent the first year mostly in bed, whereas now I’m back at work and managing most of my life. I have relapses, but they last days now, not weeks. My biggest issue is muscular spasms, I have them every night, and during the day too if things are bad.
I’m actually finding my mental health really challenging. Having spent so much time being asked if I’m depressed, and saying no, this is something physical, I think I am maybe now suffering, it’s to do with feeling so restricted, and having missed out so much. It’s much worse when I have a flare up, like my brain doesn’t have the energy to be happy, but it’s all the time now.

So I haven't been diagnosed yet but something is wrong with me... I am starting to think I have fibromyalgia or something similar, can someone with experience read this and tell me if this sounds possible.

Basically I am always hurting, every day from the moment I wake up to the moment I go to bed something is hurting... badly. Whether it's my neck, my back, GERD, interstitial cystitis (currently been suffering from this since October last year), blurry painful eyes, general aches and pains, tmj, chest infections.

My medical file is about an inch thick from the past 10 years or so. Every time I have a symptom I go back to the GP, get referred to a specialist, get checked, get the all clear, get sent away with whatever or no treatment then something else comes up straight away, it's a cycle, sometimes things overlap, but I am never well. And I am absolutely, well and truly at my wits end.

I'm not a hypochondriac, my pain threshold is good, I want to be healthy and I want my body to be strong but it just keeps letting me down. I went to the gym this morning and ran 4k, I had to wear a huge pad as I wet myself every time my foot hit the floor because my bladder/muscles etc are so weak right now. When I got off I nearly hit the floor because vertigo hit me, now my neck and back are killing me from the work out.

I have a sister who is strong as an ox, openly admits to never hurting and virtually never being ill. I want to be like this but my body just keeps throwing things at me, I don't know what to do anymore.

A few years ago I went to a neurologist (I've seen many of these for various things), he said my nervous system was overly tuned in, he was sympathetic, he said they didn't know why it happened but to some it just did. I get a lot of pins and needles, panic attacks, anxiety, sakes, racing heart (anxiety related I know).

I know somethings wrong with me. And I know I need to go to the doctor, BUT I don't want to go on drugs, my body is so sensitive to every single thing I put in my mouth, right now I can't even have orange juice without being crippled with bladder pain.

I feel so tearful, I don't tell anyone about this anymore because I feel like I look like a hypochondriac, I don't want to be seen as weak, but physically I just am.

I've seen so many therapists for anxiety, depression the works, they do their thing then send me off. It doesn't help anymore, I think I know more than they do and the last one knew it so I quit after the first session.

I think all I want right now is for someone to tell me I'm not on my own and I'm not going crazy. I just need a hand hold. I'm sorry for the rant.

I have Fibromyalgia... and it has brought along a whole host of friends too... I am also hypersensitive to medication... so finding medication to control my various conditions is a challenge... the list I can’t have reads like a pharmaceutical bible!

Midnight do you think it sounds like this is what I may have? I haven't spoken to anyone about it before and don't know anyone who (openly) has it.

Widget this will be incredibly outing as my medical history is well known to people in my RL, but here goes:

Hypersensitivity to Medication
Fibromyalgia
Interstitial Cystitis
Asthma
Overactive Bladder
Migraine
Hayfever
Benign Tremor
Irritable Bowel Syndrome
Polycystic Ovarian Syndrome
B12 Deficiency
Degenerative Disc Disease
Degenerative Facet Joint Disease

The medications I cannot take:

Penicillin
Codeine
Morphine
Tramadol
Co-Proxamol
Maxalon
Ponstan
Ciproxin
Oral Contraceptives
Gabapentin
Metformin
Dosulepin

I am in pain all the time, and never sleep well because the pain wakes me up... I am currently undergoing investigations for virtually non-stop pelvic pain; had the bloods done, scans are booked for this week...

I always feel like a pest when I go to my doctor, but she has been incredibly understanding. She was the one who diagnosed the Fibromyalgia (years ago) as a newly qualified GP, and she has told me to see her and not any of the other GPs at the practice because she knows my body and it's quirks!

Patient education: Fibromyalgia (Beyond the Basics) - UpToDate
www.uptodate.com/contents/fibromyalgia-beyond-the-basics

^^ This is a useful link about Fibro - which I've had for almost 20 years now. It does state on the first page, about halfway down, that Fibro is a real illness, so is useful to show the disbelievers out there.

I'm not going to go through my list of woes as I would only be repeating what you have all said here. But what helps me is the following -
*Go out for a walk every day
*Don't eat gluten or dairy or any 'junk' food
*Avoid chemicals as much as possible - eg cigarette smoke,
perfume,air fresheners etc.
*Avoid extreme light, noise, smells where possible.
*Gentle exercises.
*Accepting the condition and adjusting to it.EG I can't ride my own motorbike anymore, but can still ride pillion.
*Sleeping when I need to - can often go without daytime naps, but have slept most of the day today, thanks to doing some gardening yesterday.

for you all.

I've just read the whole thread and I'm sorry that so many of you are struggling. I can relate to many of the symptoms PPs have described. Warning, this a long post but I hope my experience can help some of you.

About 11 years ago I started to experience multiple symptoms which got steadily worse over the next few years. The symptoms were:

• Exhaustion. I would wake up every morning feeling like I had the world's worst hangover even though I didn't drink. Getting up and getting dressed were often all I could manage before needing to rest. I only worked 3 days a week and would be completely wiped out by a day at work.

• Brain Fog. I struggled to think through simple tasks. I had to stop driving because the action of operating the car while also reading the road felt like 'information overload' and I couldn't process it quickly enough.

• Poor memory. Struggled to remember anything. I felt like I had to search through my brain for information that I should have known right away. A Dr once asked me if my DD (then 11) had had any previous surgery (she hadn't). I had no idea! I just looked at him blankly and told him I didn't think so but couldn't be sure.

• Sore, itchy skin with dry patches. Clothes felt uncomfortable against my skin so I had to wear very loose tops and tracksuit bottoms.

• Painful feet. Every morning when I got out of bed I would feel like I was walking on broken glass. Sharp pains would shoot through my feet and it would take about an hour of walking around the house to ease off.

Joint Pain. Every day was different. Some days one knee and my hands would ache, the next day my other knee and my shoulders would be agony. My hands were 'thick' and achy most days and I often struggled to hold things.

• Muscle aching and weakness. I would struggle to stand for more than a short period of time and on bad days struggled to lift my arms up, open jars etc.

-Poor balance. Some days walking in a straight line was a struggle, I would keep veering off to the side.

• Sensitivity to noise and light. Varied in severity but sometimes had to lie down in a dark, quiet room.

• Various minor but annoying symptoms. I always had at least one mouth ulcer, sometimes many. Dentist told me some people are just prone to getting them. I also had fungal nail infections in both of my big toes. Wouldn't respond to any treatment.

I spoke to 5 different GPs over 7 years who all put my symptoms down to stress and/or depression. I was certain this wasn't the case and felt that I was being dismissed as an exhausted mum. I considered leaving my job as I didn't have the energy to cope with a full day and felt my boss and colleagues were losing patience with me.

About 3 years ago a 6th GP offered to refer me to a CFS clinic and gave me some assessment forms to fill out. Around the same time I was browsing the Active Threads on MN and saw a thread about a woman who was experiencing joint pain. One poster on the thread listed the symptoms she'd experienced and they were almost the same as my list above. She had been advised to cut gluten out of her diet and her health had improved dramatically. I was sceptical about it making any difference to me but was so desperate at this point that I would have given anything a go.

Within the first few days of cutting out gluten the 'morning hangovers' had gone. A few weeks in and the joint pain, exhaustion, brain fog and muscle weakness were considerably better and continued to improve over the next few weeks and months. I was no longer wiped out by the simplest tasks.

Within 3-4 months I had my health and life back. I could drive again, was pain free and haven't had a mouth ulcer or nail infection since. In fact all the above list of symptoms have now gone.

I can now tell within 15-20 mins if I've accidentally eaten gluten as my arms and shoulders start feeling heavy, one or more joints will feel achy, I start yawning and can't think clearly. Thankfully this now wears off after a few hours or at worst by the next day.

I never did take up the referral to the CFS clinic.

If you've made it this far and recognise the symptoms I listed above then I would strongly recommend you consider cutting gluten out of your diet, even just for a few weeks, to see if it makes any difference for you. It's not going to do you any harm (gluten isn't an essential food group) and it may make all the difference to your symptoms.

Not one of the GPs I spoke to mentioned gluten as a possible cause for my awful symptoms. I'll always be grateful to the poster who shared her story - I really wish I had taken a note of her username so I could thank her.

@Pawtrayt thank you for sharing your story. Can I ask whether you had a test for coeliac disease? Mine was normal so I'm wondering if cutting out gluten could help me. Thanks again.

wanting to be believed was such a huge issue with me. Family have not understood the severity of this condition and more importantly, how it affects me.
I was seen as the flaky one, the one who was always sick with "something" and I think that even with my various diagnoses I still am to be honest.

My local authority ended up sending me to The Spire hospital in Liverpool which is a
private hospital as they had no appointments at NHS hospitals.
The consultant there told me within the first five minutes of my appointment that I do have a diagnosis of fibromyalgia and I just burst into tears. It wasn't because I was sad, it was that someone had believed me.
He said that was a very common reaction.

I was weeks away from being 40. Looked good i suppose, life was good "on paper" but the reality was very different.

I know that's lots of my family dismiss this condition and that hurts.
My friends are brilliant though and understand my limitations and what I have discovered over the last year is that if I do too much one day, example, full day shopping in town, meal, walking around shops all day etc then I pay for it dearly ten next day especially.
I have found the "spoons" theory is very true.

As an aside, has anyone experienced lower back pain that goes deep round into the pelvic area? This is a new one for me and is ridiculously painful.
Really don't want to go back to doctors today ( ours is a ring up at 8 for appt system
) as I'm fed up of going but I really don't like this at all.

@gotmychocolateimgood after I had been following a gluten free diet for about 6 months I spoke to one GP about testing for ceoliac disease. She said I would need to eat gluten again for 6 weeks for the test to work and the blood test isn't always accurate - it's possible to get a false negative result. I couldn't face the thought of feeling so ill again to take a test that may not give me any answers.

So I don't know if it's ceoliac disease or non-ceoliac gluten intolerance. It's a bit frustrating not knowing but the most important thing is I'm pain free, can drive again and I now work full-time and don't feel wiped-out on my days off.

Hi all

Was diagnosed with fibro a few years ago. Life is limited now. I can’t bend down, can’t walk or drive very far. Can’t do my garden. Can’t get down to the ground. And now a lovely new symptom, numbness and pain and pins and needles in my hands and fingers. Awesome! It’s the gift that keeps on giving. Often I can think positively about it but the hand pains are doing my head in today. Pregabalin hasn’t worked, my body is too used to cocodamol.

I’m off work on a week’s annual leave so that I 1) don’t have to request time off for the scans and 2) have totally overdone it recently and my body is protesting very loudly about it

Midnightblue28 I hope your time off helps you feel better. I'm taking a year off teaching in September. Money wise we will just have to cope.

Thanks, I’m hoping it does too. Good luck with your year off

Is anyone else finding the changing temperature difficult to cope with? Yesterday it was really warm and I sat in the garden in rolled up jeans and t shirt. Today I'm fully clothed with an extra jumper and dressing gown on top, in a sleeping bag under my duvet. Even with wrist warmers my hands are freezing.

Ah, is that it? I'm wrapped up on the sofa feeling exhausted. It's either the weather or the fact I was very busy on Friday.

Itchy sore eyes, anyone?

Yy to the freezing hands and itchy sore eyes.

overwatered are you taking a daily antihistamine?

@ktyoupigeon yes, fexofenadine. And I have eye wash, false tears and hydrocortisone for my eyelids.

I feel like a bit of a fraud as I'm going on holiday next week. Just a cottage by the sea, it was booked months ago. But I feel like I shouldn't be going away as I'm off work sick. In reality I'll be sitting in the garden or lying on the sofa most of the time. Relatives are coming to entertain the children. Hoping to get onto the beach on a camping chair.

My head is a bit less buzzy today and I haven't felt cold which is good. No pain either just no energy.

Just popping in to say thank you for all your good will messages earlier in the thread. I really aporeciated it. Sorry I didn't come back, it all became a bit too much because I have been really really bad over the past few weeks. I'm in horrific pain. The problem is every time I find a coping mechanism my body seems to adapt and up the ante. I took Amitripyline, then some more Amitripyline but its gradually adapted.

Some days all I have done is sit in bed and internet surf posting elsewhere on MN, whilst simultaneously crying on and off. Yesterday, I achieved exactly zero and felt like shit for it, all I managed was a trip to the local Tesco Metro, cooked a chicken with some mash and veg. That was all in the entire flipping day, and I can tell you that took real effort. Afterwards I crawled back into bed. Woke up this morning and burst into tears straight away as my neck, shoulders, jaw and even my brain felt like they were on fire. Brain has no pain sensors so go figure. Now dosed up with maximum dose paracetamol. I'm not taking anything else or I won't be able to think as the Amitrip is bad enough on my memory.

I didn't want to be negative on the thread, and I didn't want to concentrate on it. My heart goes out to anyone experiencing even half these issues. I will say please don't let medical professionals fob you off as they can do very little for you once you reach crisis point. Push for a referral and list all symptoms. Doctors know very little about central nervous system sensitisation often the precursor to these things.

Take care all x

I am lucky in the sense that my symptoms are mild - I do work full time, but have given up after work activities. I feel bad enough so do not envy you having to stay in bed.

After a three hour meeting this week, I took myself to my car, and slept for 30minutes over my lunch period. Such fun.

On a positive, my aches and pains are better this week. Because of vitamin pills, evening primrose and Actimel? Or has this flare up cleared? Wait and see I suppose.

Has anyone tried a hot tub to ease things? 😜 Thinking of ways to persuade DH to buy me one!