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)

E mail!!??
Easter!

Moose could you take the pills at lunchtime for a couple of days then drop to morning? That would be a slightly more gentle drop from one end of the day to the other? You could phone the surgery or chemist if not sure?

Mumof2 my kids are 14 and 11, I won't say it hasn't been hard for them to adjust to my not being able to do stuff as it has but they've coped amazingly well. They too drive me insane but make me laugh too! Love 'em to bits!

Oh that's not good Badders I hope you feel better by Sunday. Oh and which IKEA are you visiting?! We have to go sometime in the next couple of weeks so we may cross paths unknowingly! (Ours is the Bristol store)

I don't feel much different to yesterday's exhaustion and bone ache but tbf, I'm not sure I expected to feel much different after being prodded, poked and bone crunched on Wednesday(!) Kids have been occupied so I've managed to sit in the sun for a short while this morning which was lovely. Unfortunately I'm now feeling rather annoyed as DM has just steamrollered the dates we planned for their visit by, for some unknown reason, adding an extra 2 days on to their trip (& booked travel/accommodation). My careful consideration of what I could manage besides thinking of a day or two of 'downtime' for the kids before school starts up has been totally brushed aside. It isn't happening for a while yet but this is a constant issue we have and I don't know what to say as DM gets all narky cause "we don't want to see them" and then a bit passive aggressive for a short while and i just can't deal with that at the minute sigh much and is needed right now..... sorry to moan, I just needed to get it out so I could put it aside,...

Badders I hear you. I've been in bed all day today too. Such a beautiful sunny day, rain and storms predicted for the rest of Easter and I blooming well missed it. Dh and dd have spent all day in the garden with the dogs, enjoying the sunshine.

daisy I completely forgot I shouldn't have taken one last night, so I could take one this morning - doh! Have decided to take one whenever I naturally wake in the night (usually 3.00 ish am) and then move it to the morning from there.

I totally understand how you feel about your dm's visit - moan away and get it all out on here, where we all understand. I am having similar issues, but it's with my PILs. Also had unannounced visitors today, family from dh's side. This is the third visit in two weeks, so this time I had to just apologise and go back to bed.

We have tried to explain how poorly I am at the moment, but every time we speak to her mil seems determined to pretend she's forgotten. The other night, dh was explaining on the phone about me having to shift my pills to the morning and the probable effect that will have, when mil suddenly said "Well what's she on pills for anyway, what's wrong with her?". When she has had it explained several times by both myself and dh. She hasn't forgotten at all, she's not vague or forgetful generally.

We have a big family event next weekend, actually originally thought of by us - for PILs. Unfortunately dh is now going to be working away in London and as I don't drive and it's quite a distance, I can't take the dcs. This is not going to go down well at all. There isn't anyone else who could fit all three dcs in their car and I wouldn't want them to go without either me or dh anyway, but I have a feeling I'm going to going to be press-ganged and emotionally blackmailed into it somehow. Thing is, I was already planning for it just to be dh and the dcs, as I know, not only can I not manage those sort of events at the moment, but I have also gained quite a bit of weight since I last saw the PILs and mil was unkind enough about it then, to make me not want to see them again for a long time. Have spent the last couple of hours desperately trying to find something online that I can wear if I end up with no choice.

My dm has dislocated her shoulder again, but won't go to a&e to have it fixed. She is so stubborn.

Can't sleep for coughing
I hear you wrt mothers! It's like dealing with a 70 year old toddler
I'm going to the Nottingham store
Not sure if I'm going to be up to going to pils on Sunday tbh - but as you say then the emotional blackmail starts....
Sigh

Good morning everyone. I'm hoping it is OK for me to join in. I've been diagnosed with fibro for the least 4 or 5 years, but reckon I've had it for a lot longer undiagnosed. I'm also a tutor! I manage to work enough hours (30) to get working tax credits but find that I get really wiped out by any little extra thing. This last week I've had a cold, a bad back, washing machine problems, a dentist appointment and an unexpected additional work meeting to fit in and yet I'm somehow still annoyed with myself that yesterday I crashed and did very little!

The things I find difficult tend to be fitting in extra things, especially at short notice and not being able to make longer term commitments because I never know just how I will feel. Then sometimes I'm lonely because I live alone and also work alone too!

Things I've found that have genuinely seemed to help:
Vit B injections ( thankfully my GP lets me have them even though my levels were very low in the "normal" range
Supplementing with coenzyme Q10, Creatine, Carnitine and folic acid - I've no idea whether it is just one or all of these that helps but genuinely feel a lot more tired of if stop taking them for a few days
Tackling sleep issues with a combination of paracetamol and/or ibuprofen ( can't take amitryptaline or gabapentin etc and still work as they affect me driving) and sleep hypnosis apps as well as melatonin on nights where I've either got to bed really late or am just not dropping off. Changing my mattress to a slumberland memory foam one has also helped a bit with night time aching.

So that's me! Nice to meet you all!

Hope I am still welcome here, as most of my symptoms will be ones you guys are facing.

I did a Beaver Scouts sleepover last night, 21 kids. Urgh. Was brilliant but, as always, sleep was a rarity. Kids were all sleeping by midnight, but other adults and teenagers were still coming to bed at 2am, and the Beavers were all up and awake by 5.30am. Lots of outdoor time, and pretty much on my feet constantly. Am pretty wrecked. Take away is ordered for tea, then I think we'll get an early-ish night. DD2 is upstairs cooling down in jammies watching YouTube. I really hope she doesn't nod off, or I'll get even less sleep tonight!

Hi,
Thought I may join in? I've had fibromyalgia for 6 years(ish). 3 daughters, lovely DH and a Labrador puppy ( who forces me out of the house ). Having a bit of a bad week sadly. Caught a cold and we all know how a silly little cold reacts with fibro .
Apologies for not reading through the whole thread. I'm going to try a barometric chamber soon. Anyone got any experience of them at all?

Yes yes yes to the 70 year old toddler.... I thought life was supposed to get easier as the kids get older not get harder.. sigh!

Hi Educating and Ricks and Alice of course you are still welcome 🙂

Ricks I'll be interested to hear how you get on with the barometric chamber, I did hear of a research study that showed good results.

Educating how did you know which supplements to try? I was on a FB group where one lady pushed certain supplements as she was apparently cured... lots of people did follow her 'regime' but with mixed responses and I was shocked at how much people were spending each month. I was left feeling rather confused as to what might actually help despite my own research..

Daisy, I've tried various things but in one of my random wanderings round the internet I came across a study ( I think in Belgium) where they had given one woman with fibro co q10, creation, carnatine and folic acid and it had made a big difference. It was based on the malfunctioning mitochondria theory iirc. I thought I'd give it a try. It is a pain remembering to take all the supplements so sometimes I've not bothered for a few days. Then I've noticed after a few days that I seem to be much more tired so start taking them again. It could all be placebo effect of course but I feel it it's more than that.

Creatine not creation!

OK - just re-googling, the study I was talking about is to do with a woman who presented with all the symptoms of fibro but actually had mitochondrial disease and improved with the supplements and it s in USA. There are also interesting studies in Spain on these types of supplement and fibro.
www.cortjohnson.org/blog/2015/03/04/is-fibromyalgia-a-mitochondrial-disorder/ is interesting reading.

hello all
I take a few of the same supplements as educatingarti, and have found them massively helpful. I use dosset boxes, and sort them all out a fortnight at a time, for morning and evening, so there's no faffing twice a day, and no wondering if I've forgotten. They've given me a lot more energy and brain function, as long as I am sensible. I went to a conference last week, and only fell asleep twice during presentations (oops). I also walked about 500 metres from the bus to an ancient monument and back again - but that has flattened me for a few days, but worth it! I take cq10, multivit & mineral, D3, K2, and at night, magnesium, htp5 (or somesuch, can''t quite recall) One important thing, I reckon, is to start off taking one supplement at a time, waiting a couple of weeks before introducing another, then you can tell what has worked and what hasn't. I feel that my supplements cost less than lunch once a week with a friend, which I would do, if I were well enough!
I also monitor my heart rate carefully; a high hr (120+) will flatten me for days. I don't watch TV or listen to radio - I find them overwhelming.
I'm fortunate enough that gabapentin works a treat for me.
daisychicken Bristol is my 'local' Ikea, too

Dr Myhill has quite a bit about CFS and mitochondria dysfunction on her website. She recommends a specific mito-cocktail of supplements to support the mitochondria. Here - the supplements are mentioned under implications for treatment. This is some info from Mito Action, explaining the Mito Cocktail.

They are expensive though.

Not been on here for a while (cannot cope with the font!), but have just skimmed the most recent posts. Someone (Alice?) mentioned being given some advice re dentists? I'd love to know what the advice was- sorry if that's already been asked.

Dr. Nancy Klimas recommends quite a few of these supplements, too - she's a well known researcher into AIDS and ME

Hi Velvet, advice given was relating to my resistance to lidocaine, and that having any necessary treatment done at the dental hospital instead of the surgeries provides more options wrt pain relief/anesthetic than lidocaine. She also advised that in general with a lidocaine resistance, it isn't just a case of giving extra, as it's almost like the body has almost a block after a certain level. That would explain me having a procedure that typically uses 3ml of lidocaine, me having 16ml and still feeling everything
I need to see all of this actually reflects on my medical file though. I can't keep trying to explain all of this to medical professionals who think they know my body better than I know myself. Too many times I've had to experience procedures in the most horrendous pain as they are waiting to "see how it goes" and that it "should be okay".

I take a few supplements also.

I take feroglobin, which contains : B6, Folic acid, B12, Iron, Zinc and Copper
Vit D 8000UI
Rosehip
5-htp, which contains niacin (B3 I believe?), B6 and magnesium.

Someone (assistant in H&B) asked me how I think these are working, and I said honestly I don't know, but I'm too scared to stop haha.

Alice dm, ds2 and myself all have the same problem with local anaesthetics.

I've actually lain there in an operating theatre, unable to see what the surgeon was doing and telling him every time he started cutting into me that it hurt. After 6 injections he refused anymore and said I must be 'imagining' the pain. Fortunately a very sensible nurse told him that was nonsense, as how would I know when he was touching me (screened off from neck down) if I couldn't genuinely feel it. He then proceeded to do the op (removing two cysts) anyway, as he thought if he'd did it quickly it would be ok. This was many, many years before I knew anything about EDS/connective tissue disorders etc and I had no idea why I could still feel it either.

Fortunately the last dentist I saw was lovely, listened and gave me more and more injections, but as you say, it didn't really make any difference, even on massive doses it only just about took the edge off - and that was for a root canal. I now need two teeth fixed and am too scared to go back.

Poor ds2 used to get told off when he'd had emla cream but still cried when having his blood taken as, 'you can't possibly feel it, you've got magic cream on'. Then I'd get accused of giving it too early or too late or not putting it on properly. They only finally realised emla has no effect on him whatsoever when he was in hospital with pneumonia and the consultant and registrar did it between them and had him screaming in pain. Unfortunately, the end result of that was severe needle phobia.

I am so miserable. Dh has been off work for 3 days and I have been stuck in the house. The whole family is at PIL's Easter Lunch today and I am sat here on my own again. Started taking my pills in the morning yesterday and have been too tired to move. Also had constant headache and upset stomach. It's taking me till 11.00 to get out of bed I feel so rough having taken my pill at 8.00 and yesterday I had a heartrate of 49 two hours after my dose, after getting up, going downstairs, going to the toilet having a drink of water and going back to bed. Heartrate is at bit higher today (62 ish), but I think that's probably down to the headache pain and sudden hot flushes when I have to run to the toilet.

Dh and the dcs bought me three lovely Easter eggs, including a lovely extra dark Hotel Chocolat one, but I feel to nauseaus to eat.

Oh moose
I went to pils but didn't stay long and didn't eat much
Also got chocs but not feeling up to eating them
Cough is very annoying and my throat is very sore
Bad headache
Earache
Grr
I hope you feel a bit better as you get used to the new meds schedule X

Sorry to hear you haven't had a good day either Badders. I know I'm in a bad way when I can't face chocolate!

I have a feeling I'm not going to feel much better. I was just sleeping through the worst of the side effects and exhaustion before, now I'm getting them in the day, so there's no escaping.

Pretty sure these aren't the meds for me. In fact I think I'm going to tell the consultant I don't want to try any new meds for a while. I need my brain and what little energy I usually have (which is almost non-existent, but still better than none) back, so that I can at least try and start some basic exercise. My quality of life has got worse on these meds and I am even more unfit than I was when I started them. I usually start to feel a smidgeon better this time of year and at least start getting out of the house with the dog, whereas all I'm managing at the moment is moving from bed to sofa and back. There's absolutely no point in continuing if it's not benefitting me at all.

I will stick with them until Friday, then email him with my stand tests and tell him I can't cope with the side effects.

Thanks Alice. I have similar problems with lidocaine - i recently had a crown fitted and the prep especially was excruciating. The dentist gave me extra injections but it made no difference. I think it's just a random thing though rather than fibro related - i think lidocaine has been recommended in the US as a fibro treatment!

I also find any dentistry really difficult as i can't keep my jaw open for long or exert much pressure (like biting into moulds) - temporomandibular joint dysfunction is one of my symptoms. The dentist knows about my fibro but doesn't seem to understand that it causes issues in my treatment.

Re propranolol (about 50 posts back!), i took it for a good few years for anxiety and experienced some pretty undesirable side effects including some terrible hallucinations. I was on other meds as well though, so it's hard to know which were responsible. It definitely slowed me down, but that was a good thing at the time.

Will try to catch up - thought this thread had tailed off so it's good to see it's come to life again (though sorry that so many people need it).

Sounds sensible moose
At least you have tried
Lidocaine does work on me but it does affect me badly - takes AGES for the effects to wear off and to have to have it without adrenalin
I had a molar out a few weeks ago and it was a bit grim the gum is still not fully healed
Luckily the dc don't want to do anything tomorrow and dh has apparently told his parents they can go to ikea with us on Tuesday
That's all I need

Hi
Hope you don't mind me joining in
I was given a diagnosis of Joint Hypermobility Syndrome about a year ago, this was after YEARS of going to the doc with all sorts of symptoms

Every time I go to the doc I get given a prescription of
Co codomol
Naproxen
Baclofen
Amitriptoline (?)
These seem to have little effect now
I feel like they don't care or want to help

I am so tired and in pain constantly
I get deep tissue massages monthly which helps a little, she says my connective tissue around my neck and shoulders is a mess but finally she is seeing progress

Velvet, the lidocane/local anaesthetic thing is related to connective tissue disorder/EDS, which of course can be related to Fibro. All the connections between these conditions are so complicated, it's hard to work out what's what sometimes and I think many/most doctors are pretty confused by it all.

I didn't have too bad a reaction to propanolol, other than nightmares/poor sleep. I was on it for migraine, but it didn't help with that at all. This time I'm on Bisoprolol, which I hadn't heard of, but now know has a bit of rep for having horrible side effects. It's supposed to be more cardio-selective, but if that's the case, why does it make you feel so horrible in general?

Hi PG. Sorry you need to join us on this thread, but you are very welcome. I think there are quite a few of us that have connective tissue issues in one way or another.

Another day stuck in the house here. Haven't actually left the house at all since last Thursday morning. Dh and I had promised a trip out to my favourite cafe, just to get me out of the house, but that was kyboshed by these 2 hourly stand tests.

Had one of my weird night-time episodes, so not a good night, then had a bad start to the day as well. Took my pill at 8.00 am, fell back to sleep, alarm went off to do my first 2 hours stand test, took my bp, stood up and promptly passed out - twice. Dh was downstairs and I had to text, then phone him on his mobile to ask for some help.

Managed the next two two-hourly readings, both of which still had 40 beat increases, then tried the 4.00 pm one and just about managed to stop before I passed out again, with dh and dd starting to panic.

Every time I either pass out or nearly pass out the BP monitor can't get a reading and throws up an error, so I don't know whether it's heart-rate or bp that's the issue.

After having that happen a few times since I started the Bisoprolol, I have nonw started clipping an oximeter/finger pulse reader on the opposite hand to the bp monitor, so although I don't know what my bp was doing, I do know that my heart-rate increased over 50 beats.

I have decided not to wait till Friday to contact the Consultant, as that will mean waiting for a response over the weekend. If I keep getting results like this I will send him an email on Wednesday and tell him I am not staying on the Bisoprolol.

Really fed up now.