Diagnosis, Treatment Dilemma--UK. Suggestions wanted

[bfrd]

I do not know if this is the right place to ask my question. I was ignorant of this predominant attitude and treatment model. I thought I must have ME, due to my symptoms. I had been diagnosed with Fibromyalgia 12 years ago and gradually became worse, with one 2-3 yr period of improvement and then a decline during the last few years, resulting in my being bedbound now. I researched, as most of you do, to determine what was happening, and found my symptoms listed in all of the diagnostic definitions of ME. I thought if I could get a diagnosis, then I might have a chance to have my illness treated. So I pushed for that, and my GP who was a new doctor, referred me to the Wareham clinic and specifically to Dr. Selwyn Richards, with the view to get a diagnosis if that is appropriate.

Then after only having done a lot of blood tests, my appointment came up, without me having a clear idea of what had been eliminated and what tests have even been done. So I cancelled the appointment as I felt that I did not have adequate information, and I had already seen Dr. Richards' paper advocating sending Fibromyalgia patients for CBT and GET at a regular gym class taught by a non-specialist normal fitness instructor. His opportunistic political slant was so obvious in the document's first page, that I decided I did not want to be assessed by this man.

So, I rather narrowly escaped a diagnosis that might have landed me in CBT and GET 'classes. I am alone, and have only an appointment with the Citizens Advice Bureau to help me fill out the form for renewal of my Disability Living Allowance benefit. I am terrified that my future is going to be impossible for me to survive, as my young GP has now moved away and I've been assigned to another one whose stated area of interest is 'mental health'.

The senior doctor in the practice visited me 2 wks ago and prescribed an anti-depressant which I thought was going to be milnacipran, one that is used in the US for Fibromyalgia and known to help with pain. Instead he gave me Mirtazapine. I should not have, but I took one tablet which drugged me horribly for two days, and my pain was actually worse. I felt so awful and did not take another.

Now I am really needing to hear from others who might have a similar situation or experience. I am living in the UK, on benefits due to inability to work. I cannot afford much in the way of carers, and so only have about 3 hrs a week, which I use to do housework, since that is the thing that helps most with me trying to conserve energy and manage pain levels. I am nowhere near being able to manage, and spend most days just trying to get through from hour to hour.

My pain moves around and comes and goes, it takes a variety of forms and symptoms. Overwhelmingly I feel much worse 34 to 48 or more after any increase in activity such as sitting on my lounge chair on my balcony for 10 minutes, or having a bath, which I am only able to manage 2x a week and that is totally beyond my limits. If it were not for my pride at not wanting to smell bad, I would not do it more than 1x a week.

Where can I go from here? Is there any hope at all? I am receiving all the benefits I can, but I have no other person or resource to help me. If the doctors do not and will not do anything useful, but instead try to push me toward therapy that is completely inappropriate, and if I can't even be believed when I have a real illness... then how would something like a cancer or heart disease be discovered in the future, should they arise.

I am not a paranoid person, but common sense tells me that I am at a dead end and have no way out of this mess that I can see. Any help at all for someone with no money and no family or friends to help?

 

[bfrd]

I want to add that it was suggested in another thread where I introduced myself, that I should contact Dr. Myhill. However, it seems from her website that she only provides something of a guidance info letter to one's physician about treatment, and for this charges a sum of money I would not be able to pay, even if I had a doctor who believed that this might be a real illness requiring more testing or treatment. It was not at all clear from her website whether even that service is still being provided, let alone any other.

 

[alex3619]

I am not a paranoid person, but common sense tells me that I am at a dead end and have no way out of this mess that I can see. Any help at all for someone with no money and no family or friends to help?

When there appears no way out, no complete solution, then we need to shift to two things. The first is figuring out how to survive. After that its about how to do something that, if not immediately, will eventually lead to a solution. I have been dead broke. I have had to not eat for weeks at a time. I do advocacy ... science, politics, anti-psychobabble. Maybe I wont fix things enough to help me in the long run, but maybe it will help others. Just as what others have done in advocacy in the past may have led to me being in a better place now.

We do what we can. We survive. We help.

 

[Leopardtail]

I do not know if this is the right place to ask my question. I was ignorant of this predominant attitude and treatment model. I thought I must have ME, due to my symptoms. I had been diagnosed with Fibromyalgia 12 years ago and gradually became worse, with one 2-3 yr period of improvement and then a decline during the last few years, resulting in my being bedbound now. I researched, as most of you do, to determine what was happening, and found my symptoms listed in all of the diagnostic definitions of ME. I thought if I could get a diagnosis, then I might have a chance to have my illness treated. So I pushed for that, and my GP who was a new doctor, referred me to the Wareham clinic and specifically to Dr. Selwyn Richards, with the view to get a diagnosis if that is appropriate.

Then after only having done a lot of blood tests, my appointment came up, without me having a clear idea of what had been eliminated and what tests have even been done. So I cancelled the appointment as I felt that I did not have adequate information, and I had already seen Dr. Richards' paper advocating sending Fibromyalgia patients for CBT and GET at a regular gym class taught by a non-specialist normal fitness instructor. His opportunistic political slant was so obvious in the document's first page, that I decided I did not want to be assessed by this man.

So, I rather narrowly escaped a diagnosis that might have landed me in CBT and GET 'classes. I am alone, and have only an appointment with the Citizens Advice Bureau to help me fill out the form for renewal of my Disability Living Allowance benefit. I am terrified that my future is going to be impossible for me to survive, as my young GP has now moved away and I've been assigned to another one whose stated area of interest is 'mental health'.

The senior doctor in the practice visited me 2 wks ago and prescribed an anti-depressant which I thought was going to be milnacipran, one that is used in the US for Fibromyalgia and known to help with pain. Instead he gave me Mirtazapine. I should not have, but I took one tablet which drugged me horribly for two days, and my pain was actually worse. I felt so awful and did not take another.

Now I am really needing to hear from others who might have a similar situation or experience. I am living in the UK, on benefits due to inability to work. I cannot afford much in the way of carers, and so only have about 3 hrs a week, which I use to do housework, since that is the thing that helps most with me trying to conserve energy and manage pain levels. I am nowhere near being able to manage, and spend most days just trying to get through from hour to hour.

My pain moves around and comes and goes, it takes a variety of forms and symptoms. Overwhelmingly I feel much worse 34 to 48 or more after any increase in activity such as sitting on my lounge chair on my balcony for 10 minutes, or having a bath, which I am only able to manage 2x a week and that is totally beyond my limits. If it were not for my pride at not wanting to smell bad, I would not do it more than 1x a week.

Where can I go from here? Is there any hope at all? I am receiving all the benefits I can, but I have no other person or resource to help me. If the doctors do not and will not do anything useful, but instead try to push me toward therapy that is completely inappropriate, and if I can't even be believed when I have a real illness... then how would something like a cancer or heart disease be discovered in the future, should they arise.

I am not a paranoid person, but common sense tells me that I am at a dead end and have no way out of this mess that I can see. Any help at all for someone with no money and no family or friends to help?

I did manage to save up on benefits and do tests, but I had little 'fun expense' lived like a hermit and had a very meagre diet to do it. First 'cash free' self help step is to write as detailed and comprehensive a record of your symptoms as possible. Its bloody depressing to do but the data is invaluable. I would start a sleep and activity log too, so you have ammunition to prod medics into action and a baseline to know what helps.

 

[bfrd]

Thanks for your reply. I am happy to do what I can from my bed with my computer. I do sign petitions and try to read forums, offer supportive comments, etc. I feel sometimes like a fish out of water because I have not been diagnosed with ME, and now I am afraid to try to get that diagnosis because I don't want to be sent for GET and CBT and have it appear at some point in my benefits struggles that I was diagnosed with this non-illness, offered treatment to 'cure' it and refused to go.

As far as cutting back on things... yes, I will have to do more of that just to pay for my carer every week, as I learned two days ago that my son cannot afford to send me the small amount a month he was sending. The problem with me trying to cut back is that I am not able to cook or clean for myself. I have to eat frozen dinners I can put in the microwave. I suppose beans on toast are in order. I try to eat as much fruit and veg fresh organic foods as I can get but my main meals are the kind old people get in a plastic tray from Wiltshire Farm Foods.

I will be doing the detailed symptom journal for the next several weeks at least, as I started it last week to have for my benefits application. But I'm starting to think it just makes me look like a complete loony. I have weird and bizarre symptoms popping up and shifting and changing all the time... like a dozen or more in one day. What is anybody going to make of that. Temperature going up, coughing fits and wheezing that just disappear and reappear at different times, inability to breathe properly, pain that moves about, rashes that show up at the same time every night and last for a couple of hours and then vanish... It's absolutely ridiculous. I'd be laughing but it would cause another coughing fit.

Lately I have had problems with swallowing sometimes... like choking or having a throat contraction, or getting a bit of food or liquid down into the wrong tube etc. It's causing me a lot of concern. One day I barely managed to retch the trapped bit of food out before collapsing. Living alone with all of this is concerning me. How do the rest of you cope with that?

I am also afraid to bring these things up with my doctor as I know that she has 'mental health' as her main interest, and these things seem utterly implausible. I don't want to be pressured to see a psychiatrist... for the same reasons as above.... don't need that to come out in my benefits struggle.

 

[DeGenesis]

In my experience psychiatrists will usually attribute fatigue to depression.

I tell psychiatrists what they want to hear and just head for what I want from them.

Edit: What I mean is it's all an act really. I'm always acting in front of any doctor. If you guys have docs you can be honest with consider yourself lucky. Or if you were persistent in getting that doc congratulations.

 

[taniaaust1]

In my experience psychiatrists will usually attribute fatigue to depression.

I tell psychiatrists what they want to hear and just head for what I want from them.

Edit: What I mean is it's all an act really. I'm always acting in front of any doctor. If you guys have docs you can be honest with consider yourself lucky. Or if you were persistent in getting that doc congratulations.

How do you get the drugs you need for ME from a doctor if he just thinks your symptoms are depression? It would be disasterous for me if my doctors just thought that.

 

[taniaaust1]

Thanks for your reply. I am happy to do what I can from my bed with my computer. I do sign petitions and try to read forums, offer supportive comments, etc. I feel sometimes like a fish out of water because I have not been diagnosed with ME, and now I am afraid to try to get that diagnosis because I don't want to be sent for GET and CBT and have it appear at some point in my benefits struggles that I was diagnosed with this non-illness, offered treatment to 'cure' it and refused to go.

As far as cutting back on things... yes, I will have to do more of that just to pay for my carer every week, as I learned two days ago that my son cannot afford to send me the small amount a month he was sending. The problem with me trying to cut back is that I am not able to cook or clean for myself. I have to eat frozen dinners I can put in the microwave. I suppose beans on toast are in order. I try to eat as much fruit and veg fresh organic foods as I can get but my main meals are the kind old people get in a plastic tray from Wiltshire Farm Foods.

I will be doing the detailed symptom journal for the next several weeks at least, as I started it last week to have for my benefits application. But I'm starting to think it just makes me look like a complete loony. I have weird and bizarre symptoms popping up and shifting and changing all the time... like a dozen or more in one day. What is anybody going to make of that. Temperature going up, coughing fits and wheezing that just disappear and reappear at different times, inability to breathe properly, pain that moves about, rashes that show up at the same time every night and last for a couple of hours and then vanish... It's absolutely ridiculous. I'd be laughing but it would cause another coughing fit.

Lately I have had problems with swallowing sometimes... like choking or having a throat contraction, or getting a bit of food or liquid down into the wrong tube etc. It's causing me a lot of concern. One day I barely managed to retch the trapped bit of food out before collapsing. Living alone with all of this is concerning me. How do the rest of you cope with that?

I am also afraid to bring these things up with my doctor as I know that she has 'mental health' as her main interest, and these things seem utterly implausible. I don't want to be pressured to see a psychiatrist... for the same reasons as above.... don't need that to come out in my benefits struggle.

How will your doctors etc know how sick you are if you are hiding from them a lot of what you are experiencing?

That choking throat issue, thankfully that is one I dont get but my CFS sister does. Horrible symptom. Sorry to hear you have it. (I dont think she found anything which helped it).

 

[DeGenesis]

How do you get the drugs you need for ME from a doctor if he just thinks your symptoms are depression? It would be disasterous for me if my doctors just thought that.

Yeah ME drugs would be really tough. If it were me trying to get them I would have to create another reason other than ME why I needed them.

I find writing letters to my doctors and having them read it at the appointment to be helpful. I stay relaxed and make sure I know all my facts before I go in. Sometimes I will even tell a doctor that I am a trustworthy person if a drug I need is a controlled substance and the session is going well. I really wish I didn't have to do it this way and I hope you can find an understanding doctor or come up with a plan of sorts.

 

[misskatniss]

I have experienced the psychiatric view as a quite sadistic one. Maybe not on purpose. Yet it was awful to be judged as unwilling to heal or psychotic or stuff like that. "If you don´t take neuroleptics you´ll never get up again". Those words to an almost bedridden young woman, scared to death because of her severe condition and in need of help.

Yes, it´s all my fault. I´m stubborn and stupid, because it is so great to stay in bed in pain etc. Yes, in fact there´s a huge benefit from the sick role. Oh dear. *irony off*

 

[Snowdrop]

Thanks for your reply. I am happy to do what I can from my bed with my computer. I do sign petitions and try to read forums, offer supportive comments, etc. I feel sometimes like a fish out of water because I have not been diagnosed with ME, and now I am afraid to try to get that diagnosis because I don't want to be sent for GET and CBT and have it appear at some point in my benefits struggles that I was diagnosed with this non-illness, offered treatment to 'cure' it and refused to go.

As far as cutting back on things... yes, I will have to do more of that just to pay for my carer every week, as I learned two days ago that my son cannot afford to send me the small amount a month he was sending. The problem with me trying to cut back is that I am not able to cook or clean for myself. I have to eat frozen dinners I can put in the microwave. I suppose beans on toast are in order. I try to eat as much fruit and veg fresh organic foods as I can get but my main meals are the kind old people get in a plastic tray from Wiltshire Farm Foods.

I will be doing the detailed symptom journal for the next several weeks at least, as I started it last week to have for my benefits application. But I'm starting to think it just makes me look like a complete loony. I have weird and bizarre symptoms popping up and shifting and changing all the time... like a dozen or more in one day. What is anybody going to make of that. Temperature going up, coughing fits and wheezing that just disappear and reappear at different times, inability to breathe properly, pain that moves about, rashes that show up at the same time every night and last for a couple of hours and then vanish... It's absolutely ridiculous. I'd be laughing but it would cause another coughing fit.

Lately I have had problems with swallowing sometimes... like choking or having a throat contraction, or getting a bit of food or liquid down into the wrong tube etc. It's causing me a lot of concern. One day I barely managed to retch the trapped bit of food out before collapsing. Living alone with all of this is concerning me. How do the rest of you cope with that?

I am also afraid to bring these things up with my doctor as I know that she has 'mental health' as her main interest, and these things seem utterly implausible. I don't want to be pressured to see a psychiatrist... for the same reasons as above.... don't need that to come out in my benefits struggle.

Hello @bfrd

You are not alone in your situation. This is not particularly helpful I know but perhaps less lonely.
Even with family at home it's not always as helpful as you might think. There is no way for them to really penetrate the experience that is ME. My husband is busy trying to find/develop contract work, has his own health issues and needs time to do his own thing for his own mental health. Others may want to help but don't always know what that might be.

And I'd have to say that in one context at least the label of what you have is quite unimportant. You are suffering with a severe physical illness however anyone wants to label it.

The only thing I can think to offer as a possible source of aid is to suggest that you maybe try an electrolyte drink. It's a not too expensive option and when it works it really works. If you have any symptoms that are heart related (pounding, racing, skipping beats etc) this could be of help.

best wishes,
SD

 

[Gingergrrl]

@bfrd My heart breaks for all you guys in the UK who cannot get proper testing and care outside of CBT and GET. My only thought (and I don't know if this is possible) is to see doctors based on some of your individual symptoms without mentioning ME.

For example, you mentioned breathing problems, wheezing, and throat tightness with difficulty swallowing. Can you see an ENT or pulmonologist to be evaluated on the basis of your symptoms? It is very possible to have asthma or allergies or another health problem (separate from the ME) that your doctor may take more seriously, at least I hope so since it is related to breathing!

I wish there was something more that I could do to help you and sending many positive thoughts your way!

 

[MeSci]

I do not know if this is the right place to ask my question. I was ignorant of this predominant attitude and treatment model. I thought I must have ME, due to my symptoms. I had been diagnosed with Fibromyalgia 12 years ago and gradually became worse, with one 2-3 yr period of improvement and then a decline during the last few years, resulting in my being bedbound now. I researched, as most of you do, to determine what was happening, and found my symptoms listed in all of the diagnostic definitions of ME. I thought if I could get a diagnosis, then I might have a chance to have my illness treated. So I pushed for that, and my GP who was a new doctor, referred me to the Wareham clinic and specifically to Dr. Selwyn Richards, with the view to get a diagnosis if that is appropriate.

Then after only having done a lot of blood tests, my appointment came up, without me having a clear idea of what had been eliminated and what tests have even been done. So I cancelled the appointment as I felt that I did not have adequate information, and I had already seen Dr. Richards' paper advocating sending Fibromyalgia patients for CBT and GET at a regular gym class taught by a non-specialist normal fitness instructor. His opportunistic political slant was so obvious in the document's first page, that I decided I did not want to be assessed by this man.

So, I rather narrowly escaped a diagnosis that might have landed me in CBT and GET 'classes. I am alone, and have only an appointment with the Citizens Advice Bureau to help me fill out the form for renewal of my Disability Living Allowance benefit. I am terrified that my future is going to be impossible for me to survive, as my young GP has now moved away and I've been assigned to another one whose stated area of interest is 'mental health'.

The senior doctor in the practice visited me 2 wks ago and prescribed an anti-depressant which I thought was going to be milnacipran, one that is used in the US for Fibromyalgia and known to help with pain. Instead he gave me Mirtazapine. I should not have, but I took one tablet which drugged me horribly for two days, and my pain was actually worse. I felt so awful and did not take another.

Now I am really needing to hear from others who might have a similar situation or experience. I am living in the UK, on benefits due to inability to work. I cannot afford much in the way of carers, and so only have about 3 hrs a week, which I use to do housework, since that is the thing that helps most with me trying to conserve energy and manage pain levels. I am nowhere near being able to manage, and spend most days just trying to get through from hour to hour.

My pain moves around and comes and goes, it takes a variety of forms and symptoms. Overwhelmingly I feel much worse 34 to 48 or more after any increase in activity such as sitting on my lounge chair on my balcony for 10 minutes, or having a bath, which I am only able to manage 2x a week and that is totally beyond my limits. If it were not for my pride at not wanting to smell bad, I would not do it more than 1x a week.

Where can I go from here? Is there any hope at all? I am receiving all the benefits I can, but I have no other person or resource to help me. If the doctors do not and will not do anything useful, but instead try to push me toward therapy that is completely inappropriate, and if I can't even be believed when I have a real illness... then how would something like a cancer or heart disease be discovered in the future, should they arise.

I am not a paranoid person, but common sense tells me that I am at a dead end and have no way out of this mess that I can see. Any help at all for someone with no money and no family or friends to help?

Welcome - you have come to the right place! I too thought that a diagnosis would open doors, and was shocked when it didn't and I was just left to fend for myself, with doctors apparently becoming hostile when I enquired about help, tests, referrals, etc.

You can't be forced to accept any treatment in order to qualify for benefits, and these are awarded based on your (dis)ability rather than your diagnosis. Or at least they should be!

If it's any consolation, I have long given up having regular baths as it is just too tiring and I need my energy for essential activities. No one has shown any sign of recoiling away from me, and I am quite sensitive to people's reactions. I'm sure I'd know if I smelt!

I lived in dire poverty for many years, and couldn't even get DLA - just survived on incapacity benefit and later Working Tax Credit plus the pittances I have been able to earn working from home. I've had to go without a lot, including heating. It's only the maturation of a couple of occupational pensions that has brought me back to a bearable level of income.

You will find a huge amount of useful info here, on diet, supplements, medications, management techniques (vital) coping mechanisms, mobility aids, etc.

At least you are very far from being alone now - you can talk to the many people who are in the same boat - which no one wants to be in.

 

[bfrd]

Thank you very much to everyone who responded. I do read all the responses carefully, even if I may not respond to every point made. Be assured that everything is appreciated. It may not help me get proper medical treatment, but your replies help me get a sense of how it is here in the UK for others in my situation, and how you manage with various aspects of the illness. And of course, it helps to know that I am not alone to suffer and be humiliated or ignored or whatever other inappropriate response I receive from my doctors.

To Snowdrop, I don't have a lot of trouble with heart symptoms at the moment, but I will try the electrolyte drinks, as that is a simple thing to do, and I guess I can order them with my groceries.

To Gingergrl, I really wish it worked that way, but I have to go through my GP for any referral within the NHS, and when your GP thinks that your pain and other symptoms are neuropathic at best and imaginary or exaggerated at worst, then you are not offered referrals to specialists.

I managed to get my previous GP to refer me to a Neurologist a few years back. I was having some bizarre symptoms that would indicate brain problems of some sort. She finally did, although she told me in a 'veiled' sort of way that she 'had seen this kind of thing before' and she believed it was an unusual emotional problem.

When I went to the Neurologist, he had a lovely, friendly chat with me, did the most routine of examinations such as a GP used to do in a routine exam... like checking for reflexes in my knees, having me follow a penlight and touch my nose. After this he told me there was no further need for testing.

We then had a debate about the Pregabalin which I have taken for a few years since it was prescribed at the hospital pain clinic for my Fibromyalgia. The Neurologist told me he thought my symptoms were caused by the Pregabalin. He read from the drugs reference book the list of side effects for Pregabalin. When he had finished, I said, well, how do they get those lists? He admitted that they are compiled from complaints of patients taking the medication. I said, well, then since those are the same symptoms I had before I prescribed this drug, I am not worried that the drug is causing the symptoms.

As silly as it sounds, he maintained that I should stop taking Pregabalin. Of course that was probably because he thought my symptoms are of a psychosocial nature. I said, "Okay, If I went off the Pregabalin, then what would I take for my pain? It does help me sleep about 6 hrs most days." He said, "I don't know. I am not a pain specialist."

I had told him that I used to teach classical singing at University before I became ill. He told me to keep singing, as though that was going to make me well. (I cannot sing much now, due to my illness) and he then said. "The reason people with 'your illness' get sent hither and yon is that we don't know what to do for you." I was crushed to not be offered any other help, testing, or treatment, after waiting for 3 months for this appointment which I hoped would at least rule out a few of the possible illnesses I might have.

I never even got any discussion from him or my GP of the worrisome symptoms, which I had found listed as possibly indicating a number of different conditions.

Looks like when we are judged to have an imaginary illness, that means we never even get our symptoms checked out after that, regardless of what they are. My blood tests showed high cholesterol and inflammation. I was simply told this and that everything is normal and no problems. What about the high cholesterol and inflammation?

I have so many questions, and there is never time to discuss them with any doctor. They have to come to my house and they don't like doing it, which puts us on the wrong foot to begin with. I can just imagine them feeling resentful about having to spend their valuable time visiting this woman with the imaginary illness again. sigh.

One of the most frustrating things about being ill and trying to get help from people who feel they are authorities on the subject, is to see how very illogical and unreasonable they can be.

How appalling to read the experiences of others with overbearing and arrogant doctors!

 

[DeGenesis]

My mistake, I forgot about UK factor. Here in Canada health care is the domain of each province, and not the federal government. In my province, Ontario, there is no province-wide electronic health records system, and so doctors don't know what you are saying to other doctors, unless they are at the same hospital or a doctor sends a note with a referral.

 

[ukxmrv]

My suggestion is that you try to get the help you need from the NHS but try as well to learn as much as you can from the forum (and other good ones) about what you can do to control help your symptoms.

For the NHS you need to "play the game" to get the few crumbs they will give you. You may need to look hard to find the crumbs though. Find the good doctors who can give you the crumbs. Or find other ways to get the bad doctors to give them to you. The NHS is not your friend and sometimes you need to be calculating and cunning or a threat.

As an example I have stopped seeing any doctor unless s/he can give me something that I want. All of my very poor energy needs to be focused on this. Learn how your PCT works and who you can be referred to. Don't trust your GP to do this. I have had some limited success with my local PCT's appeal process to get access to a drug that I wanted.

In the UK some PWCF, ME or FM are trapped by poverty, ignorance of what is available and powerlessness to change this. For me it was important to recognise this in myself and then work to remedy that as well as I could. My family got used to my asking for a medical test or a private doctors appointment as a birthday present or a private drug.

There have been other threads on this forum on what rights we have to see specific doctors in the UK. I am assuming that you would need an ambulance transfer to get there.

I survive (if that is the word) by getting referrals in the NHS with all the useful doctors that I can see. All my appointments are focussed on a goal. I can't leave my home at the moment but I have times when I am lucky enough and then I go to see the few good doctors that exist here. The rest of the time I save my little cash for an appointment with a private doctor (maybe once every year or so) that can offer me something. I buy supplements and drugs off the internet. My goals need to be long term. 30 years of having this disease now.

You didn't say where you are in the UK? Guessing Dorset from the reference to Selwyn Richards. Have you been in touch with your local ME and FM groups to see where the good doctors (if any) are close to you?

 

[xrunner]

My pain moves around and comes and goes, it takes a variety of forms and symptoms.

Hi @bfrd
Considering that you had been diagnosed with fibro, the migratory nature of you pain, history of neurological symptoms etc you should ask to be tested for Lyme disease (and co-infections) at least. Not that the NHS Lyme tests are very helpful but you never know. Otherwise the best route would be to go private.

I got very ill eight years ago and spent three years housebound and was going downhill hopelessly, except that at the time I had private health insurance from my employer which allowed me to be tested and diagnosed with Lyme disease at the Breakspear. http://www.breakspearmedical.com/

I know that some patients can access the tests and treatments available there through funding by the NHS or their own trust. Perhaps you could contact them and ask if and how they can help in your particular circumstances.

 

[MeSci]

I want to add that it was suggested in another thread where I introduced myself, that I should contact Dr. Myhill. However, it seems from her website that she only provides something of a guidance info letter to one's physician about treatment, and for this charges a sum of money I would not be able to pay, even if I had a doctor who believed that this might be a real illness requiring more testing or treatment. It was not at all clear from her website whether even that service is still being provided, let alone any other.

I wonder if this info from another thread might help.

 

[MeSci]

I will be doing the detailed symptom journal for the next several weeks at least, as I started it last week to have for my benefits application. But I'm starting to think it just makes me look like a complete loony. I have weird and bizarre symptoms popping up and shifting and changing all the time... like a dozen or more in one day. What is anybody going to make of that. Temperature going up, coughing fits and wheezing that just disappear and reappear at different times, inability to breathe properly, pain that moves about, rashes that show up at the same time every night and last for a couple of hours and then vanish... It's absolutely ridiculous. I'd be laughing but it would cause another coughing fit.

Lately I have had problems with swallowing sometimes... like choking or having a throat contraction, or getting a bit of food or liquid down into the wrong tube etc. It's causing me a lot of concern. One day I barely managed to retch the trapped bit of food out before collapsing. Living alone with all of this is concerning me. How do the rest of you cope with that?

I think we all have a mad array of symptoms that come and go. It's a very complex illness that affects all our major control systems - hormones, central nervous system, immune system - the lot.

One thing that causes fluctuations is exertion - I expect you are familiar with post-exertional malaise (PEM) which occurs about a day or more after we have overdone things. It can include nausea, digestive upset, headache, pain, weakness, swollen lymph nodes (could this be the cause of your swallowing/choking problem?), sinus congestion (could this be the cause of your coughing via post-nasal drip?), insomnia, polyuria and general hangover/virus type malaise.

A lot can be improved with a gluten-free, milk-free, low-grain, low-sugar diet for some people, but I don't know if Wiltshire Farm Foods would be able to cater for that.

 

[Leopardtail]

Thank you very much to everyone who responded. I do read all the responses carefully, even if I may not respond to every point made. Be assured that everything is appreciated. It may not help me get proper medical treatment, but your replies help me get a sense of how it is here in the UK for others in my situation, and how you manage with various aspects of the illness. And of course, it helps to know that I am not alone to suffer and be humiliated or ignored or whatever other inappropriate response I receive from my doctors.

To Snowdrop, I don't have a lot of trouble with heart symptoms at the moment, but I will try the electrolyte drinks, as that is a simple thing to do, and I guess I can order them with my groceries.

To Gingergrl, I really wish it worked that way, but I have to go through my GP for any referral within the NHS, and when your GP thinks that your pain and other symptoms are neuropathic at best and imaginary or exaggerated at worst, then you are not offered referrals to specialists.

I managed to get my previous GP to refer me to a Neurologist a few years back. I was having some bizarre symptoms that would indicate brain problems of some sort. She finally did, although she told me in a 'veiled' sort of way that she 'had seen this kind of thing before' and she believed it was an unusual emotional problem.

When I went to the Neurologist, he had a lovely, friendly chat with me, did the most routine of examinations such as a GP used to do in a routine exam... like checking for reflexes in my knees, having me follow a penlight and touch my nose. After this he told me there was no further need for testing.

We then had a debate about the Pregabalin which I have taken for a few years since it was prescribed at the hospital pain clinic for my Fibromyalgia. The Neurologist told me he thought my symptoms were caused by the Pregabalin. He read from the drugs reference book the list of side effects for Pregabalin. When he had finished, I said, well, how do they get those lists? He admitted that they are compiled from complaints of patients taking the medication. I said, well, then since those are the same symptoms I had before I prescribed this drug, I am not worried that the drug is causing the symptoms.

As silly as it sounds, he maintained that I should stop taking Pregabalin. Of course that was probably because he thought my symptoms are of a psychosocial nature. I said, "Okay, If I went off the Pregabalin, then what would I take for my pain? It does help me sleep about 6 hrs most days." He said, "I don't know. I am not a pain specialist."

I had told him that I used to teach classical singing at University before I became ill. He told me to keep singing, as though that was going to make me well. (I cannot sing much now, due to my illness) and he then said. "The reason people with 'your illness' get sent hither and yon is that we don't know what to do for you." I was crushed to not be offered any other help, testing, or treatment, after waiting for 3 months for this appointment which I hoped would at least rule out a few of the possible illnesses I might have.

I never even got any discussion from him or my GP of the worrisome symptoms, which I had found listed as possibly indicating a number of different conditions.

Looks like when we are judged to have an imaginary illness, that means we never even get our symptoms checked out after that, regardless of what they are. My blood tests showed high cholesterol and inflammation. I was simply told this and that everything is normal and no problems. What about the high cholesterol and inflammation?

I have so many questions, and there is never time to discuss them with any doctor. They have to come to my house and they don't like doing it, which puts us on the wrong foot to begin with. I can just imagine them feeling resentful about having to spend their valuable time visiting this woman with the imaginary illness again. sigh.

One of the most frustrating things about being ill and trying to get help from people who feel they are authorities on the subject, is to see how very illogical and unreasonable they can be.

How appalling to read the experiences of others with overbearing and arrogant doctors!

A friend of mine took Pregabalin and developed Parkinsons like symptoms. It's a strange one in that it can makes certain types of muscular pain while simultaneously making the cause worse still. There is no guarantee your Neurolgist is right, but he might well have good medical reasons for his doubts, rather than an attitdue to the disease. Given that you have benefited from it, it does seem a bit silly though.

I do fully empathise with your frustration and hope that this guy is 'one your side'. I know I do have members of my medical team who have that bad attitude.