Hospital appointment experience

[Violeta]

@Rufous McKinney see if this homeopathic remedy matches other symptoms besides the bursitis.

http://www.homeoint.org/books/boericmm/k/kali-m.htm

 

[Rufous McKinney]

Have you noticed any connection to your diet?

when I am more inflaming, its all worse. So that is sometimes the diet, or punishment for toast.

I don't have a lump, but the bone surface feels extra sensitized or something.

I was focused on stretching my arms alot above my head, extending the elbow and talking to my back/ which is also tied into that lymphatic drainage thing-..and two days later all the fluid part went away, I felt I had done myself a miracle cure.

 

[Rufous McKinney]

see if this homeopathic remedy matches

wow thats fascinating! Any number of things on that list are likely also going on.

The Head- "imagines he must starve"...(I have the anorexia ME syndrome much of the time..I don't want to eat)

I have many of the throat, lung and lymph system symptoms they describe.

The white tongue coating common here, has been reduced for a while but I notice it worsened recently.

I got rid a a horribly odd rash, that took me nearly 10 months of chinese herbs, and the rash they describe here sounds like my weird rash that didn't compute.

I'm gonna get some of that!

 

[Violeta]

when I am more inflaming, its all worse. So that is sometimes the diet, or punishment for toast.

I don't have a lump, but the bone surface feels extra sensitized or something.

I was focused on stretching my arms alot above my head, extending the elbow and talking to my back/ which is also tied into that lymphatic drainage thing-..and two days later all the fluid part went away, I felt I had done myself a miracle cure.

I can't believe you said toast. Same here! I don't know if it's the bread or the butter. Two remedies that I looked up for it so far say "worse with butter, coffee, fats", and a few other things.

Unfortunately I read that after eating toast for breakfast and lunch because I didn't know what else to eat and I don't have any energy for cooking anyway.

 

[Rufous McKinney]

I can't believe you said toast. Same here! I don't know if it's the bread or the butter

I have to watch the Type 2 onset. So I minimize bread..pasta...those kinds of carbs are too rapidly digested ....I don't think I am gluten intolerant.

Well I'm not ditching the BUTTER. That would be too hard!

 

[Violeta]

Wow, I was hesitant to send it because there are so many possible remedies and the chance that you would have so many confirming symptoms was rather slim.

I'm glad I posted it.

I can't decide if I should get that or Kali carbonicum.

 

[Emmarose47]

All you can do is your best and take it as it comes. You obviously feel you need to know so going is warranted regardless of how ill you could get, take it one step at a time and get those answers you need. You will feel better for it psychologically which can make all the difference when recovering from crashing ect
I am sorry you are going through this right now and wish I could help in some way.

If I was too ill to go I did not go like many of us and they only see me on good days. A certain day an ambulance person makes prejudise comments (suggests I could get a job like him) and nurse gets aggressive and shouts at me when I ask if they can wheel me to the room, I have to forcefully explain I am disabled and cannot do it myself in the condition I am in currently (I could not use crutches too weak) and actually got some help after she realises the situation. We should not have to deal with this.

I have a small lump on the back of my leg, its probably a sebaceous cyst but I cannot be sure and pain has been in that leg recently. My GP does not think Fibromyalgia and ME/CFS diagnosis mean I have a neuroimmune condition and anything I ever bring up its your Fibromyalgia or ME/CFS. Why would I want to go.

For me I accept what may come on my terms, what I am comfortable with. After mant years I know how futile a visit to a medical proffessional can be. But this is about a different condition that they can and should look into for you so good luck and I want only a positive outcome for you. Please do let us know how you get on.

I hear you @CSMLSM ...
I get them same here ...it's your m.e CFS or fibro ....eye roll

 

[Nord Wolf]

Damned if you do, damned if you don’t. It is a gamble, and a big one a that in my opinion. I’ve always felt that MECFS is a disease, but a symptom of something else…. obviously something causes it. There could easily be other underlying conditions at play… other conditions that could be discovered and treated through testing, etc. However, as we all know, these in themselves are exhausting and can trigger flare ups in the ME/CFS condition. I’ve been told to sit an do nothing for the next 5-8 years and I might rebound. OK, BUT my condition could easily remain as is or get worse in the time of doing nothing too. There is no guarantee by sitting around for half a decade or more will help me at all. After all, while doing nothing for that amount of time allows the body to slowly deteriorate by doing nothing, and could allow another underlying condition to grow worse because it wasn't discovered by research and testing.

Like Hap, many people ran the medical gauntlet and found nothing, and got worse. But there are others who have found treatable issues and improved. So yes, it is a gamble.

Personally I cannot accept this will be my condition from here on out. I also cannot accept that there isn’t a test that will detect something deeper that we might be able to treat to induce some improvement.

Without testing I would not have found the severe drop in certain regions of the endocrine system (that I’ve been able to treat), or found an old pulmonology test report they had buried 7 years ago, that stated the sighting of mild emphysema (that has allowed me to get oxygen supplementation [and by the way I’ve never smoked a day in my life] and further scans on the lungs that would not have been available to be before), as well as other things discovered in the medical gauntlet. So exhausting as it is, I continue to work with my docs to hopefully discover more. Perhaps a time will come when enough tests have been run to call a halt, that I will accept where I am at that time.

But for some, all of that may not be an option. It is a gamble for us all.

Emma, I hope your tests come out clear and your inflamed symptoms subside soon.

 

[Emmarose47]

I hear you @Nord Wolf it seems to come down to internal intuition as to how we play things as well as talking it out with others .

I'm still in flare wk 4 after going to the original out patient appoint that I spoke about at the begin of this thread . Trying not to focus too much on the days and just on the healing or I get into too much fear and doom.
The consultant couldn't do the biopsy and camera due to scaring from when they tried to do a biopsy some wks before .
My option now is to go in and have a general anaesthetic and stay a couple days . But I recently learnt that they want me to have a pre op which can't be done by a community nurse .
I booked pre op for next wk and proceedure for a mth . Thing is this flare ( as all of them is gruelling and so if I do come out of it I doubt I'll be willing to put myself in another one so soon
Groan .....
Meantime I'm taking tablets to stop the bleeding which I'm not comfortable with and they are due for review this wk .
The tablets have the most horrendous side effect profile I've ever seen of any meds I've taken. .
In the meantime I'm going through eviction process where I live and so will need to move next mth ...

I'm pretty much at the point where it's all so ridiculous that I've just living in surrender .
I can't work it out so I'll let spirit work through me ....

If I come out the other side still housebound and 50 % bedbound I'll be lucky ...

On the plus I don't feel I have cancer
X

 

[lenora]

Hi @Emmarose47....given the circumstances, couldn't your move be postponed for a month or two? Right, as if people wait for anything....it's not an easy thing.

Yes, pre-ops are a pest and each doctor seems to have a favorite that he likes to use. In one case I had to go downtown, the nurse messed every available vein I had up, whereas I could have had the same thing right around the corner. Not only that, I nearly ended up mugged when I left the downtown office. They've since installed bright, bright lights....but still they lurk, I'm sure.

We'll look forward to hearing (hopefully better) news from you. In the meantime, drink a lot of tea and have lots of cakes and biscuits. Feel better. Yours, Lenora

 

[Emmarose47]

Hi @Emmarose47....given the circumstances, couldn't your move be postponed for a month or two? Right, as if people wait for anything....it's not an easy thing.

Yes, pre-ops are a pest and each doctor seems to have a favorite that he likes to use. In one case I had to go downtown, the nurse messed every available vein I had up, whereas I could have had the same thing right around the corner. Not only that, I nearly ended up mugged when I left the downtown office. They've since installed bright, bright lights....but still they lurk, I'm sure.

We'll look forward to hearing (hopefully better) news from you. In the meantime, drink a lot of tea and have lots of cakes and biscuits. Feel better. Yours, Lenora

Nope as I'm going through an eviction process and so it's gone to court . I can fill a defence form out and get a bit of an extension ... But the bailiffs will come in mid to late October and I HAVE to be out legally .
To be honest it's bloody time this has been going on since February and I'm living in a house with the original harrassment person ..
Ships in the nite style situation ...

Ps I don't eat cakes and biscuits
But herbal tea is good ...

 

[Rufous McKinney]

I'm pretty much at the point where it's all so ridiculous that I've just living in surrender .
I can't work it out so I'll let spirit work through me ....

oh gosh how overwhelming. Your doing a great job tackling this difficult issue. Maybe you could do a sketch of yourself, as the powerful spirit you are, facing these challenges and taking them on.

Its so easy to overwhelm....hang in there....

 

[Emmarose47]

Ah it's my spiritual power and friends support that are the strength ...

 

[Anchoress]

I haven't found hospitals or doctors to ever accomodate my medical condition such as not to make me worse. I could for example attend whatever appointment they like if they took me out horizontally with shades and noise cancelling headphones on, travelled me to the point they needed me and brought me back all as gently as possible. But instead they require me to sit up and walk into the ambulance and then stand in reception for half an hour with noise everywhere and bright lights and no where to lay down. My GP's over the past few years have refused house visits so I simply no longer have access to medical care of any kind, I am just too ill for doctors and hospitals.

That is shocking and makes me so angry for you.. (((HUGS)))

 

[BrightCandle]

That is shocking and makes me so angry for you.. (((HUGS)))

I wouldn't go into a hospital if I can't walk out. They are far more likely to do me harm given the idealogy of doctors at the moment than actually help me. The NICE guidelines can say whatever they like but there is no way to actually get it enforced if they choose to mental health hold you. So until there is safety against such torture with a change in attitudes and a system in place to extract me then I will not be attending a hospital I can't walk out of under my own power. The NHS is mostly just dangerous to ME/CFS patients and becoming more so despite the guideline change.

I don't see that changing much in the next decade.

 

[hapl808]

The NHS is mostly just dangerous to ME/CFS patients and becoming more so despite the guideline change.

Same in the USA. I think I'd be unlikely to visit a hospital unless I thought death would be imminent without hospital intervention.

 

[Anchoress]

Yes ( and I am panicking even now) I had a narrow escape a few days ago ... Only that I have a friend with an influential title stopped the nonsense! Let us face it; they just do not want to put basic care in. Period. I have no illusions re medical " care" for this illness. Last time I mentioned M.E to a hospital dr when I was already there, she sneered at me and asked if I knew what that stood for.. looked gobsmacked when I reeled it off.. so these days if I even contact my GP ( who I have never met. She is on a neighbouring island! ) it is for repeat meds .)The GP for this island did something so unprofessional she is not allowed near me by the health board;s ruling! They cannot sack her without leaving islands with no medic. Her father was a rightly respected GP and she plays on that. You need your wits about you!

 

[Emmarose47]

I was due to go in for biopsy and camera of my womb after severe menopausal bleed ( old blood ....
My deep intuition is I don't have cancer .
They asked me a week before the proceedure to go in for a pre op . I couldn't I was still in a 5wk flare after visiting the hospital prev .
So I rescheduled for a mth apart but then decided to postpone the whole thing due to just needing to have some stability with m.e / CFS symptoms and a move of house coming in the next 2 mths .
I don't know what I'll do in the future but for now I just can't face putting my self in a gruelling flare up . .

 

[Anchoress]

Still shaking re my very narrow escape last week from being, probably, sectioned. by the Gardai. In absentia!
We have almost no access to ordinary medical care here and they know the situation re the dr who has the " care" of this island and who abused me so badly she is banned from coming near me, unless a dire "life threatening emergency". And even then... She is on the lightest duties possible I gather.
I know the system and who to complain to and how so that protects me.
My overseas overseer stepped in and she has seen this before. So it got defused. I have though a theory, partly based on experience, that many folk with illnesses like ours get totally inappropriately sectioned through the sheer ignorance of even medics. Less so than 30 years ago.

 

[BrightCandle]

Less so than 30 years ago.

Its improving and the NICE guidelines gives us some protection. A few weeks ago the DHSC groups for this asked if we wanted a way to feed back problematic doctors and departments and it was a resounding yes so I hope that happens. I think we need two key changes, we need a place to report Foes for ME patients that refuse to follow the new NICE guidelines but I think we need an "extract me" helpline so we can get legal aid if we are being abused by BPS believers in a hospital somewhere. There is a future where neither is necessary but I dont see a route from here to there without it as these are not accidental attitudes. Few countries have the same ability to correct this however and without high level intervention I fear this will take 50 years to route out and that is if you start teaching everyone the right thing now, which isn't likely.