Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

[Katymac]

Hi all,

I've had a combination of these for a while; I have good days & bad days

The World Health Organisation (WHO) had re-designated CFS/ME as a neurological illness and CFSKate has loads of info about new research going on

I thought we needed a fluffy supportive and lovely thread - join in

NO NEGATIVITY (apart from whinging about how crap you feel or how rotten people we encounter can be or how unfair it is that you have it)

Hi i am new to this thread, have had chronic pain in back hips and pelvis on and off for 6 yrs, every day for 3 and last month got dx of fibro. I had resisted it for a while but it does actually fit very well. Now I have had a recent MRI done with new L3/L4 anular tear and bulge, I already knew i had slight bulges on l4/l5 and l5/s1, they said there are cysts on hips but not anything to worry about, plus some "touching on nerve root" mentioned to do with the vertebral bulging. so a mix of central sensitisation and mechanical. I also have hypermobile back, knees and elbows , recently have had some shoulder and chest pain. have moved through most drugs, now take tramadol, paracetamol,codeine (phasing out) , pregablin and recently came off the nsaids- was on diclofenac for 3 yrs 3x a day, the dr got a bit worried about it. went without for a month for the mri and kept going- it's better really as it had startted to set off my IBS. I am signed up for more spinals (SIJ and FACETs) together, and waiting to start cbt and physio- mixed feelings as i have read about the pacing but i do get some benefit from exercise as long as i dont overdo it. I use a tENS too, when i remember! I get memory probs, forget to pay bills alot and have to set about 10 timers a day to try to keep up. i am studying fll time - psych- but struggling a bit at the mo. over 2 yrs into the 4 yr course, getting there i guess but vv worried about working. lately tiredness and insomnia have become more of a pronlem. tonight it's because i was finishing psych data processing and hunched over too much so my back felt like i was being stabbedin it, off to bed now to try to sleep- as i have taken my nightly amitryptyline and some codeine too, i dont usually take it at this time , this is a bad day - sorry for the essay, hope you are all getting lovely restful sleep and wake up refreshed and springy :)

Have you been to a specialist in hypermobility?

no, I have just been told about it- re the beighton scale, by a physiotherapist in musculo-skeletal dept. i see a chiropractor about every 6 wks, she seems quite aware

Maizie what do you score on the beighton scale?

not that high-, 6 I think, elbows, knees and able to put hands flat on floor when bending forward, my ankles are hypermobile- a podiatrist did a check over. think it just worsens other things going on, aggravating the issue. I had an MRI last month and have bulges at S1/L5, L5/L4 and a bulge at L4/L3 with small annular tear, so there is mix of mechanical and systemic problems i guess

This is probably the best hypermobility unit in the country:

www.thehypermobilityunit.org.uk/

They can assess your hypermobility and they have specially trained physios to address your specific issues.

You might find a cranial osteopath helpful too.

I recommended the cranial osteopath because with hypermobile joints regular cracking at normal osteopath/chiropractor can add to the problem as it wears the joints.

A cranial osteopath produces the same effect but without joint cracking.

There was an article that might help people with Fibromyalgia written by Jacob Teitelbaum . I wish I could do a link for you but my computer skills are back in the dark ages! A search should find it. Its on a vitality website. The article is about the 7 different types of pain with Fibro - and how to manage them.

Needing a recommendation.

I need an adjustable height stool to use in the shower, but the shower is in the bath, so has the curved sides at the end. I've seen folding seats that attach to the wall. Is that my best bet?
Also a tall stool for the kitchen (also adjustable if possible) that has arms, but can be folded away when not needed (because sometimes, just sometimes, that happens )

Fallen off the thread (tis Fuzzpig)

Signed off for another 2 months. Dr is really lovely but seems to think going back to work once a week will help. I think her view is clouded by the fact my mental health is pretty shit too, but she does understand that it's purely my physical issues keeping me home - depression is energy-sapping for sure, but for me pain is the main problem, not fatigue. She asked if I should just resign but I can't because I'll be utterly screwed financially if I do.

Anyway, I have to have more blood tests and then I'm getting a referral to rheumatology. She agrees that fibromyalgia would be a more accurate diagnosis for me than CFS. Not that it really makes much difference in terms of prognosis or treatment :(

Had been feeling pretty good the last week or so but yesterday I crashed big style. Blah.

Oh No Fuzzpig! So sorry you have crashed, but glad you are getting referred to rheumatology. Its best to check out all the options,

Interesting article about neurons getting viruses which gives more scientific credibility to Chronic Fatigue etc.:

So today I had my follow up with my Neuro. Both MRIs 9 months apart show 'white blobs of uncertain significance' and we can't rule out possibility of MS yet. I will have a lumbar puncture done within the next 6 weeks or so

Ooh Alice that sounds difficult news! I am still waiting for an appointment with the neuro but might be in the same boat. I did not realise how long this would all take. Waiting about is so hard! (Hug)
I think you can get a stool that fits across the bath sides - I don't know if that would be high enough for a shower. I just sit down and shower off in the bath. For the kitchen I just use a sort of adjustable height bar chair but it swivels which is not ideal ( and its heavy to move around). I used a folding bar stool before that but it did not have enough back support for me, and was too high.
Does anyone else have problems washing their hair? I get this whiting out of my central vision when I wash my hair. I don't know if it is from bending my neck or from the warm water on my head. It takes a while to clear and leaves me feeling quite shaky. Its a bit like the visual warning of a migraine - but always affects my entire central vision in a complete circle- (like a flash afterimage) whilst for me a migraine aura shimmers and starts close to the vertical mid line and gets bigger.

Oh Alice, I too am on that rocky road, unfortunately I still have no clear answers. I had a lumber puncture and visual evoked potentials done in September and they were normal but my brain MRI shows numerous white matter lesions, not certain what they are. I have to just get on with things, diagnosis of fibro so treat symptoms and watch and wait. Its horrid not knowing exactly what is going on.

Anyway, just an update really, I am just so exhausted with all the preparations for Xmas, I was out like a light last night at 9.30pm, I couldn't even finish the book I am reading! I never sleep through tho, so still wake up very tired and have awful dreams! I shouldn't be this tired, I only do housework, I don't work. I take a multivitamin, vitamin D, magnesium and all my bloods are normal.

I have finally got my appointment to see the dietitian in February for help with my bowel and dyspepsia symptoms. I also need to lose about a stone in weight, my cholesterol and trigylcerides are high and now have some fatty liver seen on scan, so I really need to work on my diet after Xmas! New Year, New Me! ha

Anyway sorry to moan, its good to vent sometimes.

Ah, I made it! Only an hour or so and I'll be on holiday (minus a few things, grrr). Had a major, major crisis at work that I've been spending the last few weeks fixing, which has been terrible as I had to do some of it from home in bed on the phone as I simply couldn't get up.

I finally saw the gastro. Good news is that my CT scan is clear - I was a bit worried about bowel/ovarian cancer, so at least that isn't the issue. He's given me a medication that's supposed to help with the pain, and wants me to see a dietician. He also gave me a speech about 'you have to eat' and how if I keep not eating they'll have to feed me with a tube. I was a bit angry at that - it's not like I'm trying not to eat, I just feel sick when I do. And I'm eating more than I did before (maybe up to 1200-1400 calories/day now), yet I'm still losing weight. Which they don't want me to do.

I find that a bit ironic, as I am finally again the weight I was a dozen years ago when a Dr told me I should lose a stone to be healthy, and set me on a long path of yo-yo dieting and weight gain. But now this is a 'fine, healthy' weight and I should not lose (despite being a stone above the upper limit of healthy BMI). Too bad someone didn't say that 12 years ago, as I could have saved myself a lot of effort.

Although the weight loss has definitely slowed, so perhaps it will stop and make them happy. I really feel like it has very little do with me, as I am now eating the same amount of calories as I did back when I was steadily gaining weight and getting lambasted for that (and disbelieved, as well), and now I'm slowly losing weight and they're upset about it. I'm a little bit wary of what a dietician will do, as I'm really scared I'm just going to get disbelieved and/or blamed in some way. And just sick of seeing HCP in general.

www.dailymail.co.uk/health/article-3368873/A-life-ruined-tick-bite-Wildlife-volunteer-32-left-body-pensioner-daily-agony-bitten-Mexico.html

Wouldn't she be more likely to have contracted lyme disease?

Hello all,

Thought I'd post , especially after seeing the recent update about Lyme disease..

8 weeks or so ago my very fit and healthy DH suddenly became unwell. Heart palpitations, joint pain, light headed ness, crushing fatigue that would sweep through his body, tingling sensations, pressure in his head... On and on it went. He plays golf four or five times a week at a high level, he's at the gym three or more times a week, he runs. He doesn't smoke or drink and he's a normal weight, he's not had a day off work in over 15 years.

He went to the doctor who basically fobbed him off. They did bloods which all came back normal. They did ECGs. They gave him a physical check. And then they implied it was stress. Stress?! He has NO history of stress and anxiety and we just couldn't understand it.

He couldn't go to work for nearly three weeks. Sometimes he could barely walk past our front door. I just couldn't accept that this wasn't caused by an external factor and I wasn't happy with the doctor just saying ' a lot of people feel like this and it's normal.'

It's not bloody normal! So I spent weeks trying to find out what was wrong with him and then, out of the blue, we were talking about his golf course being on Heath land and there being loads of deer there and I said ' have you ever been bitten by a tick? ' and he said YES!! Late summer he recalled a weird bite that was lumpy and black and smooth and didn't itch. He just ignored it as is his wont but it was enough for me to put it all together and he went back to the doctor who eventually agreed to a Lyme blood test. And yes, he has it.

So I just wanted to put that out there to everyone. I watched ( and am still watching ) a healthy active man being unable to push the Hoover round. Being unable to get out of bed until 10am instead of his usual 6.45pm and the doctor being quite keen - once they've ascertained it's not something ultra serious - to out it down to ' one of those things ..'

Please wrack your brains and see if you can recall being bitten- it doesn't have to be recently. Even if you can't recall being bitten, think about your lifestyle and if you've been in an area that has a high tick risk ( you can google this ). And also remember you do NOT have to have the bullseye rash. A lot of cases don't.

Hope that helps someone

Not an ME sufferer myself, but as I know someone who has it, I thought I'd remind everyone to get diagnosed for ME if you have CFS (which isn't really a diagnosis at all, more of a description).

As I understand it, ME is a virus infection and/or you get it if you don't rest enough while you have the flu.

Exercise makes it worse, so you need to know what exactly you have before trying to heal it with the usually recommended cures.

It,s a very gtricky thing though as some camps think ME is a distinct condition from CFS, others see CFS, ME and Fibromyalgia as having same mechanism at its source but just presenting differently in each person. As I understand it ME has involvement of a particular infection but apart from that the symptoms for all three have huge overlaps. Which symptom is the most major may be the deciding factor in whether you are dx with CFS (fatigue dominant) or fibromyalgia. (Pain dominant). some people move from one to another as their symptomolgy changes. Have even heard of people having one of these dx wrongly for yrs and then finding out they actually have MS, as the initial symptoms can mimic the others.

I have also read it is more likely to have another condition if you have one- incl depression, lupus, RA, thyroid dysfunction,disc degeneration. so I am slightly concerned as the tendency is to stop investigating when one is dx-ed. in my case this is fibromyalgia. I worry they will not "find it all" now. I guess you just have to educate oneself with reading research and if feeling something is new- chase it up. However this has always been my attitude and it hasn't worked too well so far as it took nearly 7 yrs to get this dx.

I talked to a lady who does research into pain last week at a neuroscience conference and she said the latest thinking is that centrally sensitised pain syndromes such as FM also have peripheral generators that help maintain the syndrome as well as what is going on in the brain. This makes me think that would make it harder to train the brain out/ some way away from the sensitised way of functioning. but I will try everything with good faith and positivity.

hope you all had good xmas day and not too much pain and fatigue. I got through present opening by having trampoline !! No tramadol, (had to leave that in) first thing instead of usual time around 11. It was awesome and they both loved all their gifts, but after breakfast I was falling asleep tired and went to have a nap- ended up sleeping 12-4! I feel a bit guilty for that as I wanted to spend all day with the kids playing. But I played with them a lot once I was up again. It was not something that was a choice really, and having had busy days, travelling and 4 hrs sleep last night I should have expected it. My pain is so much worse when I have not slept much. I am very happy the day went well, just a little sad that I have limitations such as these. Could be a lot worse I know, I am very lucky to have them and Dh, we say it to each other every day 🌲☃⛄️🍸🍷🎆 hope you all have lovely rest of Yule time

Hope you've all had an enjoyable and peaceful Christmas

Does anyone know if there's a service which can help advocate and offer support with different medical appointments etc? Really struggling with brain fog at the moment at a time when I feel I need to be on the ball about my health. Concerned the GPs I am seeing may dismiss my symptoms as down to the ME now I have the diagnosis.

I posted my blood test results a few weeks ago, since then I've been formally diagnosed with ME/CFS. The person who saw me requested a few blood tests which I had done earlier this month. I've managed to get a copy of some of the results but the rest are missing so I hope to god they have actually been carried out as I have a needle phobia at the best of times!

My serum vitamin B12 came back as 162 ng/L (range 130-1100)

Serum folate 3.6 ug/L (range 2.7-15)

• - -

Thyroid serum TSH 3.76 Mu/L (range 0.35 - 3.50)

Serum free T4 12 pmol/L (range 8-21)

Se thyroid peroxidase Ab conc *

Your folate is way too low, your B12 needs to be over 500 and possibly nearer 1000, your TSH and FT4 results show your thyroid is starting to fail. My guess is you will also be deficient in ferritin and vitamin D. All of these are capable of giving you symptoms of pain and fatigue.

When I had results like yours, I was very unwell indeed, and diagnosed with CFS. I now have ferritin, folate, vitamin B12 and vitamin D at optimal levels and am on thyroid replacement. I am now almost completely well, but sadly the NHS is so bad at this stuff that I have had to do it all myself.

I've just looked again and realised Tiptops that your TSH is actually OUTSIDE the reference range,which just shows what a joke the whole thing is.

If you get yourself over to the Thyroid UK forum on www.healthunlocked.com, the lovely people there will help you.

On what grounds were you diagnosed with ME?

Thank you so much for the replies MrsTweedie

You are right that my ferritin has been low - in March it was 15 ug/L (range 23-300). In fact my ferritin is an ongoing problem. When I had these recent tests done ferritin and Vit D should have also been included but the results have gone missing so will chase that up when I'm back at the Dr on Wednesday.

I should add that my GP has only ever reported low ferritin to me. I've only discovered some of my results are low/ out of range by requesting copies of my blood tests myself. Maybe I am expecting too much but I feel like someone should have joined the dots up with my results and ME presentation.

I am very unwell - I'm mid twenties and this is ruining my life. At the beginning of 2014 I had a prolonged illness for 3-4 months which was suspected as glandular fever. I've never been well since. My main symptoms are brain fog, fatigue to the point of being mostly bed bound, muscle aches, difficulty concentrating, cognitive problems, sleep problems, frequent UTIs and just feeling constantly exhausted. I've gone from being someone who was very active to spending most of my time sitting or lying down. I am now quite intolerant to noise (rarely able to watch TV, sound must be very low) but don't know if that's just because I feel so bloody fuzzy in my mind that I need peace and quiet or a symptom. My functional ability level at the ME consultation was rated as only 10%.

Will have a look on the link you've sent me, thank you. I'm honestly not normally hard of understanding, or at least I wasn't before I got ill! Just finding this all such a struggle.

Brilliant that your health has much improved but appalling that you've had to manage alone. I can't understand why so many people with these symptoms aren't properly investigated - the cost to the country must be huge. How many people are not working or working reduced hours for symptoms that could be improved if not cured?

Thank you again