Spooning into summer - life with chronic pain & fatigue.

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

kate - really interesting that second link (first one didn't work).

"there is some preliminary evidence that the nerve damage is caused by the immune system."

"small-fiber neuropathy caused by an overactive immune system, instead of fibromyalgia"

Honestly, do wonder if doctors ever talk to each other. My problem is an autoimmune condition and is known to cause neuropathy among many many other symptoms. The immune system attacks the nerve fibres. That causes pain and pins and needles.

I do wonder how many of the people on this thread have an autoimmune problem that is the underlying issue.

I have been diagnosed with a mental disorder in the past prescribed valium and then CBT therapy. The medical profession finally agreed its a physical illness after 20 years.

The valium made me feel like I was stood outside my body looking at myself. I stopped taking it after 1 day.

I do think there's still too much stigma around mental health conditions, people adamantly even refusing to consider the component as if psychiatric equals fake and that makes me feel sad. There are bad attitudes in the medical profession too. Psychiatric does not mean and never will mean "all in your head". Interestingly, there is research that suggests schizophrenia may be an autoimmune condition.

I agree, candy. I think there is still far too much assumption that people should just be able to think themselves out of mental health problems, without recognising that the brain is as much a biological organ as the rest of the body. Mental health problem does not equal 'not real'. But I guess I understand with the overall societal view, it can be a problem if a disease is considered psychiatric and then brings in those assumptions (which shouldn't exist, but unfortunately do), making it even harder for people to get appropriate treatment. But fighting against it as if psychiatric = dismissing, I feel contributes to the stigma against mental illness. In a perfect world, underlying biological causes and mental stability would be addressed for diseases without prejudice, but we don't live in one. It's a tough situation.

Interesting about schizophrenia. My Mum has that -- I wonder if there is a genetic component, and if it could be related to me having CFS/ME...

God yes! Hope I dont need to clarify that when I said "all in their head", I specifically meant physical problems within the brain, not that they were imaginery!

Oh no no, I realise that people here get it but it seems in the wider world, psychiatric illnesses are so misunderstood. Just venting!

raggedymum - schizophrenia is apparently thought by some to be linked to Multiple Sclerosis.

I posted upthread about Epstein Barr Virus and MS - as far as I can make out, we have an old retrovirus embedded in our DNA, called a HERV. Epstein Barr Virus can turn on the HERV virus, and then you can get trouble.

This is an old article about the links between Multiple Sclerosis and schizophrenia, that blames HERVs. I don't know whether scientists still think this, it was 4 years ago.

"Schizophrenics also showed signs of inflammation in their infection-fighting white blood cells. “If you look at the blood of people with schizophrenia,” Torrey says, “there are too many odd-looking lymphocytes, the kind that you find in mononucleosis.”........
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Whether people develop MS or schizophrenia may depend on how their immune system responds to HERV-W, he says. In MS the immune system directly attacks and kills brain cells, causing paralysis. In schizophrenia it may be that inflammation damages neurons indirectly by overstimulating them. “The neuron is discharging neurotransmitters, being excited by these inflammatory signals,” Perron says. “This is when you develop hallucinations, delusions, paranoia, and hyper-suicidal tendencies.”"

Then it talks about other things that can turn on the retroviruses, it says "Retroviruses, including HIV, are known to be awakened by inflammation—possibly the result of infection, cigarette smoke, or pollutants in drinking water."
This is interesting to me because it seems most people with ME got ill after an infection, but some got ill after exposure to things like sheep dip pesticides, and it seems like they are often the most ill.

candycoatedwaterdrops - Karina Hansen, this is the kind of thing that worries me, you hear stories like this even after the Norwegians successfully treat ME with rituximab

"On Feb 12th 2013, 5 policemen from Holstebro county, Denmark, came to Karina’s house and forcibly removed her from her bed. There were also 2 doctors, a locksmith and 2 social workers present.
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Nils Balle Christensen and Per Fink do not believe that Karina has Myalgic Encephalomyelitis. The doctor who met with the family on May 31st receives his information about Karina and ME from Nils Balle Christensen and Per Fink. This doctor said that ME is a “figment of the imagination” and doctors who believe in ME are “imbeciles.” (Nils Balle Christensen and Per Fink are officially in charge of all ME patients in Denmark.)
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Karina was extremely ill the first week or so after she was committed to Hammel Neurocenter.
Stress and overexertion make Myalgic Encephalomyelitis worse and Karina used a lot of energy trying to get help when they committed her. She repeatedly told them she did not want to be there and she made 26 phones calls for help, including one to the police, before her phone died. She has improved in comparison to that first week, but there is no significant improvement from when she was at home. She still cannot walk and she is still very anemic.

When asked if Karina could speak in complete sentences, the doctor said: She says and has always said, “You are killing me.” That is a whole sentence."

CFSKate, I think that what they're doing to Karina is despicable. The fact that they insist she has a different kind of disease than she does makes it worse, but it would be horrible even if she did have a psychiatric problem. It makes me worried for actual mental health patients under their care.

They have a patient upon whom they are forcing ineffective therapy against her wishes and her family's wishes. This is inappropriate whatever the illness.

It's completely different from the situation where my Mum phones me up to say they've locked her up and the doctors are poisoning her, and then I call my Dad and find out she had an episode, went off her meds, and they're trying to stabilise her. I tell her to trust me and Dad, and that the doctors know what they're doing, and she takes her pills and a few weeks later is better and back at home. If a few weeks later she wasn't better, we'd talk to the doctors about trying different medications. Given that there are now a broad array of drugs to treat schizophrenia, it would be irresponsible of the doctors to claim that the drug they chose is the only one they'll prescribe, despite evidence that it's not working.

Yet this is what they're doing to Karina -- there is a wide range of potential treatments for ME, and yet they are sticking doggedly to an obviously ineffective regime. The fact that because they think she has a mental illness, it then gives them a right to do this is harmful to both ME and mental illness.

Thanks for this discussion, as it has helped me work out some of my thoughts around the issue.

Not sure I belong here, but I'd like to join if I do.

I've just been diagnosed with trigeminal neuralgia after the worst 2 weeks of my life. I've never known pain like it. The carbamezapine I've been prescribed has tackled the major spikes of pain that had me on the floor sobbing, but doesn't do anything for the constant throbbing toothache/earache pain that I also have. The cold makes that even worse so I've had to explain to work that I'm pretty much well enough to come back but there are certain things I won't be able to do - like break duty. And I'm feeling miserable as it's my birthday and I'm having a day when the background pain is particularly bad - then I can still feel it trying to flare up even though the medication is keeping it down (to a point).

The medication also leaves me feeling zonked out and tired all the time. And that's on the minimum dose, which I think they will need to up as the pain is still there.

Can't take co-codamol on top of the other because a) it's completely ineffective for the nerve pain and b) it knocks me completely out and I can't keep my eyes open.

Hi 2kids :)

Carbamezapine is an antiepileptic, isnt it? Tricyclic antidepressants are also good for neuropathic pain, might be worth a chat to the gp to see what they think about that? Mine did make me dopey, but only for the first week or so, i'm fine now.

I found the opposite with tramadol btw (have given up taking it now). It must have been doing something, as took away my toothache, but bugger all for the everyday pains

Ps, welcome! Just throw yourself in to the thread, they're a welcoming bunch

Thanks, beyond.

It is an antiepileptic. It's the first thing they prescribe because it's got a good result for controlling nerve pain. I'm hoping they can adjust the dose as I've had some very painful moments today so it's not completely controlling everything.

There's lots of others to try if it doesn't prove too effective.

Am rather scared to come off them to try something different though. It's documented as being 'the most painful thing known to medicine' and 'the suicide disease' as so many people top themselves because they can't take the pain. And I can believe it!

Hi 2kids welcome to the gang, although sorry you have to join us. I have severe joint damage in my jaw and suffer extreme facial pain as a result, so I do empathise.

Good morning. Just popping in. Will be back this eve and read properly and catch up :)

I am just popping in to say... DH got a job! :o

Those who've known me for a while will know this is a huge deal :) he has been out of work (barring a tiny bit of casual stuff lately) for about 3.5 years since getting a back injury, being medically retired and then job seeking for a year.

I am obviously really happy. But I am inwardly bricking it. I have not the faintest idea how I will manage with doing all the stuff that DH currently does... school run, housework...

Mind you it's clear things have been improving as a year ago I wouldn't have been able to contemplate this at all! So that's a good sign right?!

Yeah, fuzz! Good vibes and spoons your way for the extra energy expenditure...

I am annoyingly sleepless because I'm so stressed! House sale back on track, but unexpectedly soon hand-over date -- I don't know how we're going to get everything out in time. And DH just hurt his back (a usual throw-out-back thing, nothing serious), so I am going to have to do the carrying. Current plan is head over there every night after work. But just doing that today made me so tired I wanted to cry :( And there is so much I am behind at at work and I really need to buckle down there, but I'm having trouble thinking straight. And so, what does my body do when I'm worried about not being able to get enough rest? Give me insomnia. Thanks! Okay, will try to sleep again.

Fab news fuzz. Sorry to be nosy but can you afford a cleaner? Might take some of stress away.

Good news Fuzzpig. Hope it works out well.
Raggedy - fingers crossed for getting it all done on time for your move. Can you rope in some extra hands to help since DH back is playing up. Has he some mates that will help?

Cleaner... not sure yet. Depends how much better off we are (get a fair whack of HB at the moment, so will lose some of that but might get tax credits, and we need to work out if we will need a little bit of paid childcare, and we will be losing free school meals too). And TBH we have a lot more decluttering to do first - but it is definitely one to consider once we've settled a bit :)

I'm getting better at planning things around my limitations - for example I will take over the sorting/washing part of the laundry and the putting away, but DH will still do the hanging out bit because wet laundry is far too heavy for me and bending is difficult.

All the best for your move raggedy! Is there any way you can take a bit of leave while you're sorting all the stuff out?

Hello

I used to be on a MN ME/CFS support thread years ago, but life got in the way and other health problems cropped up and I lost it.

I will post my history below, but please don't feel you have to read it all - I know how hard it can be to take in long posts when you are struggling. I just need to get it all out and make sense of it in my own head:

I was dxd with Post Viral Fatigue Syndrome waaay back in the early 90's, just prior to the horrendous press attacks on 'Yuppie Flu' etc. I struggled for years, had the occasional GP who was interested enough to want to find out what was wrong, but just kept sending me for repeated basic bloods and being puzzled by the results showing high CRP and sedimentary rates, but not knowing why and eventually giving up and telling me just to live with it. I have been relapsing and recovering on and off ever since.

I also suffered with severe, complex migraines for most of my adult life, but these were diminished for a few years by 6 months on Topiramate back in 2006.

Then in 2011 I started having strange neurological episodes, not dissimilar to TIAs, as well as numbness and tingling on the limbs of one side of my body and memory/cognitive issues. Having had MRIs done for my migraines (they found multiple lesions and evidence of recent encephalitis and followed up with blood tests for lupus, which were negative) my GP referred me straight back to my neuro who ran basic tests, took lots of details and started mooting MS as a probability. Typically, by the time the tests were run I had been working hard at pacing myself, improving my diet and developing my fitness and was probably at the healthiest I've ever been as an adult. Lumbar puncture was clear, but knocked me flat with LP headaches and severe back-pain and triggered a relapse. I then had another MRI (no significant changes) and I can't remember what the technical term is but nerve conduction tests on both extremeties and vision (which I was told came back ok).

Neuro decided as they couldn't see any active lesions and there didn't appear to be any new ones (although they couldn't say for certain as they'd lost my original MRI for comparison) it wasn't MS and suggested she see me on 6 monthly review appointments and see how it goes. In the next 6 months I started to develop intentional tremor. Dh videod me trying to ice my ds's birthday cake and we took it to the appointment, but she wasn't interested and wouldn't even view it - just did basic neuro exam and put me onto a 12 month review. I told her how upset I was not to have an answer and be able to tell people what is wrong with me when they ask and she actually said "just tell them you have ME or Fibro or any one of the current fashionable diagnoses - of course neurologists don't believe in any of them, but at least it would be something to tell people" I just about gave up all hope at that point.

Several months before my 12 month review came round, first of all I had an ankle injury and my body went haywire, overreacting to the damage, whole foot and ankle swelling up and going black, purpural bleeding etc. The pain was excruciating, but no-one could find any corresponding damage. Turned out I'd developed Complex Regional Pain Syndrome, which is a malfunction of the sympathetic nervous system. I was on crutches for 6 months and gained a lot of weight whilst immobile.

That autumn (2013) I also went away for the weekend with dh and friends. We'd just sat down to dinner in the restaurant when I started to feel really strange (a bit like the world kept tilting and everything kept shooting away from me - hard to explain) so dh took me back to our room and I lay down, sending him back to finish his meal. A bit later I started feeling really odd, like I was going to be sick or have a bad stomach, but not sure which, dragged myself into the bathroom sat on the toilet and that was that - lights out. From what we've pieced together with various doctors it seems I had two tonic-clonic seizures. I was bruised black and blue on my head where it had repeatedly hit the toilet and had bruises all over my ankles as they were tangled up in a chair that was opposite the toilet. I also had a perfect fist shaped deep bruise on the inside of my upper arm where I'd fallen on my side and landed on it. I woke up with my head under the toilet, chair on it's side and feet by the door - physically impossible if I had just fainted and fallen off the toilet, as my head would have been away from the toilet bowl and my feet near it. After the first seizure I lay on the floor feeling totally confused, didn't know where I was or anything, eventually hauled myself back up onto the toilet and - bang, it happened again.

Called my GP who said I had to go to A&E, they kept me in the medical assessment unit for a whole day with nothing but one blood test and no food or drink and only suggested admitting me when I told them I wanted to discharge myself, as I needed to get back to my ds, as he has ASD and would be distraught enough.

I was sent for an MRI and EEG over the next couple of months, but the MRI was done on an open scanner so probably not really all that useful and the EEG was done almost two months after the seizures so not much help either.

Didn't get to see a neuro until 4 months after the seizures and then my neuro was on maternity leave and I saw a really horrible locum. In the intervening months I had no more big seizures, but was having regular episodes that I was told resembled complex partials - always between 4 and 6.00 am and witnessed by dh, who was with me at the appointment. The locum implied my seizure may not have actually happened because no-one else saw it, then said the nighttime episodes probably weren't seizures, but more likely migraines or hormonal. He then decided to arrange a 5 day mobile EEG and sent me away.

Hospital called and booked the EEG, it was all organised and involved 5 separate appointments across the week. A week later I had a letter from the locum to tell me he'd been informed that I didn't meet the criteria for a 5-day eeg so it had been cancelled and he would review me again in clinic asap. Three weeks later I received 5 letters telling me off for failing to attend my EEG appointments and informing me I'd been kicked off the neuro list for non-attendance. Phoned and explained and the hospital said they had no record of the letter sent to me by the locum to cancel the appointments - whereas the letter said it was their department that told him I wasn't to attend - arse, elbow - much!

At this point I gave up. I did call my GP, who was furious and told me to come in and see him and he'd chase it all up, but I'd seriously had it with the lot of them by then and decided that after over two years of being messed about they clearly didn't have a clue what was going on and it was pointless going back to them. So I have just left it at that.

I've bumped along since. I have good weeks and bad weeks, my complex regional pain syndrome causes me problems, but I have had physio and learned how to manage. Unfortunately, since seeing the locum, my complex migraines have returned with a vengeance.

I mostly manage it all myself, use the spoon method for pacing and do what I can, when I can, trying not to push myself beyond my limits - if that's possible with 3 dcs, one of whom has ASD and is a full-time job on his own.

What drew me back here was that I have just had a really nasty bout of flu and it's knocked me right back. The flu itself is gone, but I am back to only being able to stand for a few minutes at a time, wobbly legs, total exhaustion, cog fog, headaches, clumsiness, numbness and pins and needles in my hands and aching muscles and joints. I know I am just at the beginning of what feels like a significant relapse and at the moment I'm really struggling with facing it and starting to feel very depressed.

I don't have the brainpower or energy to research possibilities for what might be wrong with me anymore, I just want to be able to get through the day and be there for my dcs. Feel like I'm failing on all fronts at the moment.

So that's me - a long drawn out story, absolutely no help from doctors/hospitals and back at square one with some extra scary symptoms to add a new twist.

Apologies again for the length of my post and a medal to anyone who managed to wade through it all.

Just had a look at the Dr Bell's severity scale and realised I'm currently functioning somewhere between a 30 and 20.

Oh, moose, so sorry to hear all you've been through :( It sounds like the system has really failed you.

Your neuro sounds bad, and the locum even worse! I wish I had any good advice, but I have no idea how to navigate things either. I'm considerably higher functioning (hmm, took a look at that scale, I'm maybe 60-70), but spent 5 years believing I was 'normal' because my GP said I was, when it turns out I'm quite limited compared to my peers. Is there any way you can find a fatigue specialist somehow? That's what I'm waiting for a referral to (5 months now, though, and still no word).

fuzz, I may have to take leave, but I'd rather not as I'm already quite behind, and deadlines don't really care my working hours... We're hoping one of DH's friends with a van can help us on the weekend, but I haven't heard if he's even asked yet. DH has just (like 15 minutes ago) gotten really ill and is currently lying down in the bathroom. Not good. I asked him yesterday if we could request a later date, but he said he thought we could make it (although he also said he didn't know how). I don't want to bug him (as he is handling all the details), but I might ask again. We still haven't been over tonight.

In better news, I saw my private physio for my returned SPD. He confirmed that my pelvic joints had slipped out of alignment, pushed them back in, and said I should be feeling better in a week. I've noticed immediate improvement, and haven't used a walking stick since I saw him.

Thank you raggedymum. There are no fatigue specialists in my PCT/area. There used to be one consultant that worked with people who had CFS/ME but I believe he's moved on now. My mum's best friend has ME and despite being registered disabled gets almost no help. I don't even have a current diagnosis of anything, so wouldn't stand a chance.

I think my problem is that my symptoms don't follow the NHS's nice flow-chart style diagnosis. There's no obvious pattern and my symptoms don't add up or aren't cohesive enough for anyone to even try and look at the big picture. No-one cares how badly it affects my life.

I probably function at the same level as you during my good times and have only had one period of a few months in my entire adult life when I was fit and healthy. I really want to try and get back there, but it was such a long, uphill struggle involving diet, supplements and gradually increasing exercise that I can't even face starting. I do need to do something though as my current diet and weight are terrible, due to a combination of comfort eating and not having the strength to cook from scratch.

I noticed from your post that you have SPD. I feel for you. I had terrible SPD with ds1 and ds2. With ds1 I was signed off work from 20 weeks onwards, as I was totally immobile. What sorted it in the end was a course of osteopathy. It worked so well that I barely had any problems when I had dd four years later. (I have joint hypermobility syndrome, so my pelvis just falls apart when I'm pregnant.)

Just realised what a physical wreck I must sound. I don't tend to think of myself in that way at all, so it comes as a bit of a shock when I actually see it all written down.

Again just a really quick post - will catch up! But RE the cleaner - you could just pay for X amount a week that you can afford. And ask them to do that amount of work. So rather than paying the full rpice for a full house clean could just pay them half and then they just come in and do whatever they see is the most pressing in that time or a set list of specific tasks that would help you.