CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

Poor you frustrating would be an understatement, apparently I've to use China Oil now cures everything!!!

I've pulled a muscle in my right arm, I know exactly when I did it too but today it is extremely painful. DH was like oh what now there's always something painful I've already told him I find everything more painful. Sore sore sore day today I think.

Sorry to hear that sweetkitty I hope you've been able to rest up and it's feeling a bit better by now.

I have had a horrible weekend. Back to back migraines and really potsy.

GP was to call me this morning re my prescription and she did ... to tell me that she refuses to prescribe. (Why couldn't she have left a message last week to say that, instead of keeping me hanging on yet another week?) She said she's taken advice from the pharmacy adviser (the one the secretary told me the week before last had said all the GP needed to do was speak to the consultant) and the answer is no and she's written to my consultant to tell him, so to take it up with him. Afaik, she hasn't spoken directly to the cardiologist at all.

Called the cardiologist's secretary - she's on leave all week. Last time I called she was off for the second half of the week.

Spoke to another cardiology secretary who said if the GP won't prescribe the best I'm likely to be able to get from the consultant is one prescription, which would be pointless - not to mention distressing, if it helps and then gets taken away.

She checked my file and a letter, enclosing a prescription was sent out on the 17th, but she couldn't see how much the prescription was for. As expected, I have to take the prescription to the hospital to get the meds. She also checked when my next appointment is and thanks to the ivabradine debacle, it seems I have been bumped from the 3 month appointment I was due next week, to one mid-September.

I need to speak to him about my nocturnal episodes and to talk through my cardio results (which were sent to my gp, but I wasn't copied in on) and I don't understand who is supposed to be monitoring me on the ivabradine now. I assume it's him, as the GP refused the joint care agreement, but how will that work when I can never get hold of anyone there?

To say I am unhappy would be a bit a massive understatement this morning.

Moose What a saga. Could I make a suggestion that you contact your local CCG about this. My DM was advocating for one of their friends who sounds as though they were in a similar situation concerning some dementia meds - consultant approved drug/GP would not prescribe etc. It came down to an issue of funding and GP's lack of knowledge about the drug involved which was resolved by a training issue (in order to prescribe a medicine you need to be conversant in it, its contraindications, etc). This may of course be different in your circumstances but it may worth a call if you've not already gone down this route.

As for me, neuro letter to GP mentions possible 'psychological' cause to my symptoms (though he is sending me for more tests). The fact that I've gone from fully functioning (i.e. being able to walk) to after an infection, this, could be apparently in my head……

Thank you MidMay. Someone else has suggested I do something similar, but using PALs to advocate for me. I'm going to hang on until the consultant's letter, with the prescription enclosed, arrives. Then speak to his secretary to ascertain whether the prescription will be ongoing and if I'm still not getting any joy at that point, will call PALs for advice.

Dh was all for going in all guns blazing and making a complaint, but not only do I not have the strength for that, I honestly think it will just make things worse.

So sorry about your neuro's letter. Sadly most of us have had similar suggestions made at some point before we we're eventually diagnosed, so you're not alone. In fact I read an article recently that said something like 85% (not sure of exact figure) of people with dysautonomia/pots had had their symptoms ascribed to psychological/mental health causes by at least one doctor.

Similar to what you said about the meds. Some doctors are very reluctant to admit they don't know what's wrong and would rather suggest it's a psychological issue. I had one neuro who agreed it was physical, but admitted she didn't know what the cause was and was basically waiting for something worse to happen so she could and another that told me it was my age, then the menopause ... I was 36.

Okay, the prescription has just arrived and it's only for a 28 day course. No instructions included about what to do when I get near the end of that and no advice re side-effects or monitoring.

Can't call his secretary until next week, because she's on leave and the other secretary I spoke to in cardiology couldn't help when I rang yesterday.

Oh moose, it all sounds so tough. :( Sorry I don't have anything useful to say - barely keeping up with life much less the internet at the moment!

Although maybe we could magically switch prescription behaviour - I went to pick up my regular prescription yesterday and there was a giant box of some other medication. After a bunch of confusion and consulting medication books, I figured out it was likely one that had been suggested a few months ago for excess bile by whoever did my colonscopy. But the GP called me and as I said that I wasn't actually having any stomach issues at the moment I would really prefer to not add more medications, especially as I had reacted badly to one recently. He agreed, but now another GP at the practice has filled it. There was a new letter from the gastro, but saying I should take it to fix diarrhoea - an issue I don't have (and have never had - I don't even know why he thinks that). So now I have a medicine I don't want, on repeat. I took it home as I didn't want to be fussed at by the gastro, but I have no plans on taking it until I see my GP. And I read the insert - in the part where it tells you what to do if you take more than you should, it says "Go immediately to A&E". I've never seen that before - even things like codeine and paracetamol tell you to contact a doctor, not hare on off to A&E right away; it sounds mighty scary. I'm really not feeling good about this med.

In good news, DH finally got a cleaner! I haven't had to make myself ill to keep a clean house this last week.

In bad news, work is being hell. Off on 'holiday' at the end of the week, but not really as I'll have to be in constant contact - we're setting up online things that I'll have to check daily. I'm so exhausted.

Sorry, that wasn't clear - the pharmacist was consulting books and using my stories and we figured out what the med was. Sorry to use so many words to explain a non-problem that you'd love to have :(

I don't think that's a non-problem murmuration, it's just another example of them not being in control of their own systems, over complicating things and prescribing meds without proper guidance for the patient.

Good news you've got a cleaner. Lat weekend dh suggested we get both a cleaner and a dog walker. I am mulling it over, because we definitely need a cleaner, but a) I have huge issues about having strangers in the house and b) I'd feel like I need to do a massive spring clean of every room before they came.

Dh has started having counselling, basically due to the fact he's not dealing with the realisation that my health problems aren't going to go away and also the fact he clearly feels angry towards me for it, even though rationally he knows it's not actually my fault. It was his counsellor that suggested coming up with strategies to take the strain off both of us, rather than laying blame for things not getting done. Of course he's now cross with me for not jumping at the chance, so I'm in trouble anyway.

Hello, I lost the thread and cotton wool brain and headaches have been stopping me from thinking.....(!)

Moose - hope you manage to get the meds sorted soon, why do they have to make it so difficult?? Have you thought more about the cleaner and dog walker option? Would having the help outweigh the other issues?

Murmur - glad you got a cleaner sorted, I hope it takes a load off and makes things easier.

Really wish we could afford a cleaner if I'm honest. We had a lovely shock from the tax office - said we hadn't told them that dh had increased his income.. we did tell them but can't prove it so have to pay back some money which is wiping us out of spare cash. I've had to stop the chiropractic treatment - mostly it didn't help but it did help with some of the pelvic pain and that's now back with a vengeance and flaring my lower back pain too. Got a GP appt to see if she can offer any help but that's 5 weeks away (I could see someone else sooner but would prefer to see my regular GP). On a good note I start my art course in a few days which I'm excited about - just hope I can cope with the pelvic and back pain on top of everything else.

We can't afford a cleaner either daisy but then again, we can't really afford not to have one - in terms of actually managing to stay married and get through this.

Of course if I can actually start the Ivabradine and it helps me as much as it has some others, I might actually be able to start doing a lot more housework and dog-walking myself.

Sorry you're having tax office problems. We had the same with the working/child tax credits office, when we had told them of every change. We just called them, told them we couldn't afford to pay it all in one go and they arranged for us to pay an easily manageable amount every month instead. If it is WTC or CTC give them a call and offer them £25 a month until it's cleared - they generally accept it no questions asked. They are not supposed to put you into hardship by taking money back off you and I would say cancelling medical treatment that helps control your pain comes under that.

Does your GP's offer telephone consultations? I find I tend to be able to get a phone consult sooner than an actual physical appointment.

Course sounds good, it's important to make sure we do things we love or we'd all go bonkers.

Those of you who have lower back/pelvis/hip/buttock pain - how hard has it been to get the underlying cause investigated? I'm at a bit of an impasse with the gp.

Velvet A dynamic ultrasound might shed some light on what is going on? Have you been offered this? If not worth mentioning to GP? I had some pelvic troubles a few years ago. I had physio which really helped strengthen the muscles which support it. I never got a diagnosis though and I'm getting similar weakness again now but not pain.

Thank you - it isn't something that has been suggested. The gp thinks it is sciatica and/or connected to my fibro, which it probably is, but is reluctant to find if there is an underlying problem - she thinks if something was detected that needed surgery it could make things worse rather than better, so not much point in finding out .

I've had nearly two weeks of being barely able to move, and this has been going on at intervals for years. My inlaws have offered to pay for me to see someone privately about my fibro - i'm not sure what's to be gained there really, but i am wondering if it might be an opportunity to at least get my back properly investigated, or whether i just need to be more persistent with the nhs. Private healthcare does not sit well with me so i would feel a bit of a hypocrite accepting the help.

There's a lot to be said for strengthening the muscles around your back. I practice yoga during my better periods, and that has really helped on all kinds of levels, but especially with my back. I've had such a rubbish time the last year or so though that all the good is being undone because i just can't exercise.

I hear you Velvet especially re the pain affecting your ability to help yourself. Would a compromise be seeing an osteopath? You might find one who offers ultrasound too.

Velvet I was the same about private healthcare, until my GP pointed out to me that I was actually freeing up an NHS waiting list by going private instead. I'd never thought about it that way before. I only went private for the testing/assessment and diagnosis, but I was looking at a minimum 18 months waiting to be seen on the NHS and as the waiting lists are ridiculously overloaded already I thought, on-balance, that the GP was probably right and it was best for me and also helping some other poor soul move up the waiting list.

On a different matter, a friend of mine has just discovered her sciatica/hip type pain, that has caused her agony for years, was all related to a misaligned jaw/neck. She's been having both dental and osteopathic work done by an 'osteopathic dentist' (I didn't even know there was such a thing) and the hip pain has completely gone. I'll see if I can find a link to some info.

Some info here.
More here.

Can't find the really good site about it, but will try and have a look again later.

Thanks moose - i'll have a look at those links. Interesting - one of my other symptoms that i've mentioned on here before is temporomandibular joint dysfunction (and i get frequent neck and upper back pain). It would never have occurred to me to link my jaw issues with my back problems! Of course it may not be, but it's certainly worth investigating - i've never heard of an osteopathic dentist either!

So far Velvet I've only been offered physio for my lower back, hip, pelvis, buttock, tail bone pain and at those appts, I just got given exercises to do.. no treatment as such. Each session of physio consisted of 2-3 appts and then discharge. I haven't had any noticeable benefit. These appts have been in the last 14 years and the most recent one was when I'd just been diagnosed with Fibro (Fibro started in 2009, diagnosis in 2011), recently I paid for chiropractic treatment as the pain was increasing and I wanted to know if that was the Fibro or perhaps related to the previous problems I'd had in pregnancy in 01-02 and 04 or something different. Chiro did help with the SPD pain but I didn't find any relief with the other pain. I've since had to stop chiropractic treatment as I've run out of spare money and am waiting for a GP appt to see if I can get further help on the NHS. Unfortunately the SPD pain has started again. It's worth seeing if your GP can offer anything else and if you have the money, worth trying chiropractic or osteopathic treatment to see if you get any benefit.

I don't know what help you can get privately for Fibro, maybe other posters have thoughts on that.

Moose if finding the cash to have a cleaner/dog walker would help your marriage by taking that load off, then it's worth it. We are mid house rennovation so for now it's just trying to manage the dust but once that's done then I hope we will be in a better position financially without all the house costs to afford a cleaner. For now, I muddle on and everyone has to pull their weight and help.

Thanks Daisy, and MidMay too - i missed your post before. I'm a bit apprehensive about being manipulated without knowing what is going on in there first. I have recommendations for a good osteopath locally, so that is something i could look at.

I have noticed that my back gets worse in line with my cycle - the muscles seem weaker in addition to the pain. I am so sure there is something hormonal going on - i've said before that all my symptoms vanished when i was pregnant, every single one including my back, which was expected to get worse given they think it is sciatica.

Sorry your illness is impacting on your relationship moose. I know how frustrated my dh is at the consequences of my illness, and he is permanently exhausted trying to work and pick up the slack when i'm out of action. We treat my illness a bit like an uninvited houseguest, which helps to separate it from me so his feelings are directed at it rather than me - most of the time anyway. It's good that your dh is acknowledging the issue.

Thanks Velvet. Unfortunately, he didn't acknowledge the issue. It all came to a head and I told him he needed to get help or that was it. He wanted me to go for counselling, but as I've been through therapy twice and am pretty much at peace with my health problems these days I pointed out that it wasn't actually me that needed help to think/talk it through. Plan is for him to have 1:1 counselling first, then both of us go for couples counselling.

Today has not been a good day relationship-wise though. I did think things had improved a bit since he started counselling, but from today's performance I may have been being a bit over-generous.

Ah. I'm sorry to read that moose x.

This thread took some finding! Everyone ok?

I had an appointment today with one if those Drs that don't believe in fibro. Apparently we just have a really low tolerance for pain and he made a point of saying several times that if I had surgery it would be really painful . But apparently because I do have both the test results and clinical signs to show I have carpal tunnel he couldn't just write me off so I might as well have the surgery. I wish I hadn't mentioned the bloody thing now... No one even told me that I was seeing a surgeon, they referred me for steroid injections.

Sorry for just turning up and ranting

Hi, Living. Frustrating!

I'm dreading my gastro appointment in a couple of weeks. Did manage to gain 5 of the 6 lbs I'd lost since I last saw him, after a 2.5 week holiday where I ate 3000-4000 calories each day. But as soon as I got home and stopped eating total crap the pounds are dropping off again. I think I've just readjusted my set point somehow, but he's going to see anorexia as he told me I had to gain weight. Seriously, if for 2.5 weeks of eating double my normal intake I only gained 5 lbs, I really don't see a way to put weight back on. And it makes me feel sick. I ate a stir fry yesterday and it was so nice to have veggies again, after so many heavy, creamy, greasy restuarant meals. And I'm still near the upper end of healthy BMI, and I think I look good and I'm happy with my weight. I don't see why I have to gain? I so don't want to see him :(

How are things going moose?

I've come to moan, too - as mentioned, just returned from holiday. Was visiting family and it was exhausting. I'm not sure I can manage this anymore. Visiting my parents is far to emotionally exhausting, and I use up holiday for this. Have a fever today and have been alternately super hot on this overly hot day, or huddling freezing under my duvet. But I absolutely need to get into work tomorrow. I think I need to plan something like a week off work after seeing my parents, but I don't see how to actually manage that. I have no idea how I'm going to manage at work for the next few weeks. I do have a few days booked off in Aug.

Hi can I join please ?

Just been told I have CFS and hyper mobility not really sure what I should be doing if anything ?

Have a physio appt this afternoon for my joint pain / issues - hoping it will be useful

Hi sherbert! I think we might have lost everyone...

The physio will hopefully help your joints! Most important thing for me is pacing. It takes a while to figure it out though, lots of trial and error.

moose hope you're ok!