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Feeling like I want to sue my GP/Doctor


[SW...]

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I swear - Im a 30 yr old guy who had to give up his job 6 years ago because of chronic fatigue syndrome. Ive taken it on the chin as best as possible and done a lot of work privately trying to get better - but it has been very difficult. Last year I had some doubly tough times, had to break up with girlfriend and flatmates moved out. I started taking zopiclone regularly to help with sleep. I also thought it would help with the CFS getting regular rest.

 

Initially I was pescribed Zopiclone as needed - and had to see my GP to get it. The issue I think was when a different doc gave me a repeat prescription of Zolpiclone. He said I didnt need to come in a see a doc every time I ran out. Hence me starting taking it daily. I had no idea of the consequences - and the ensuing months of hell. After 7 years of trying to recover from CFS - this has really tested me to the limit.

 

I managed to live independently since I had CFS, for better or worse, but now Im sitting here at my parents house avoiding my phone, basically quit the job I had managed to create whilst living with CFS...havent been to my flat in London for weeks...my life is screwed. Honestly - it wouldnt be so bad if this was the first crisis I had to deal with - but Ive been sitting in support forums for the last 6 years talking about recovering from CFS - and now I have this on top. Its a nightmare as we all know - and its made my CFS much worse.

 

Im sorry if I sound like Im whining. Ive tried to remain philosophical about the struggles Ive had to deal with - but just as I was seeing some hope last year - I had this happen. I dont think I deserve it.

 

After reading so much suffering around these forums I feel so angry for others as well. Honestly I feel like finding out if I can take the NHS (National Health Service in UK) to court...I wonder if this is possible. Im sure its not and I would be blamed for taking it consistently - but still...there is simply not enough awareness about the difficulty and I dont feel inclined to take this lying down at the moment...

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I swear - Im a 30 yr old guy who had to give up his job 6 years ago because of chronic fatigue syndrome. Ive taken it on the chin as best as possible and done a lot of work privately trying to get better - but it has been very difficult. Last year I had some doubly tough times, had to break up with girlfriend and flatmates moved out. I started taking zopiclone regularly to help with sleep. I also thought it would help with the CFS getting regular rest.

 

Initially I was pescribed Zopiclone as needed - and had to see my GP to get it. The issue I think was when a different doc gave me a repeat prescription of Zolpiclone. He said I didnt need to come in a see a doc every time I ran out. Hence me starting taking it daily. I had no idea of the consequences - and the ensuing months of hell. After 7 years of trying to recover from CFS - this has really tested me to the limit.

 

I managed to live independently since I had CFS, for better or worse, but now Im sitting here at my parents house avoiding my phone, basically quit the job I had managed to create whilst living with CFS...havent been to my flat in London for weeks...my life is screwed. Honestly - it wouldnt be so bad if this was the first crisis I had to deal with - but Ive been sitting in support forums for the last 6 years talking about recovering from CFS - and now I have this on top. Its a nightmare as we all know - and its made my CFS much worse.

 

Im sorry if I sound like Im whining. Ive tried to remain philosophical about the struggles Ive had to deal with - but just as I was seeing some hope last year - I had this happen. I dont think I deserve it.

 

After reading so much suffering around these forums I feel so angry for others as well. Honestly I feel like finding out if I can take the NHS (National Health Service in UK) to court...I wonder if this is possible. Im sure its not and I would be blamed for taking it consistently - but still...there is simply not enough awareness about the difficulty and I dont feel inclined to take this lying down at the moment...

 

I'm sorry that you feel so angry. CFS is  one of those diseases that no one understands that well. I had Lyme Disease and thankfully, (after 3 months anyways), I found a doc to give me the right antibiotics for it. I don't know much about CFS, but I just wanted to say that it must suck to be tired and angry all the time. I've heard that people with CFS have food sensitivities and sedative med problems. Maybe you can see a specialist and get a full blood panel done. Since there is no test for CFS, maybe have them check your thyroid, testosterone, anything that can lead to fatigue.  Here's a website I found about CFS and ruling out other conditions: http://www.aafp.org/afp/2002/0315/p1083.html

 

But mate, you'll be okay. Seems like tapering off of Z drugs and getting tested for other things might be your best bet. Wouldn't it be nice if it was something as simple as anemia or low hormones?! You never know, right? Just wanted to let you know I've been in somewhat of the same situation. The flu like feelings, a doc that ignored me, and feeling crazy. Take care of yourself, this could be temporary.

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I'm sorry that you feel so angry. CFS is  one of those diseases that no one understands that well. I had Lyme Disease and thankfully, (after 3 months anyways), I found a doc to give me the right antibiotics for it. I don't know much about CFS, but I just wanted to say that it must suck to be tired and angry all the time. I've heard that people with CFS have food sensitivities and sedative med problems. Maybe you can see a specialist and get a full blood panel done. Since there is no test for CFS, maybe have them check your thyroid, testosterone, anything that can lead to fatigue.  Here's a website I found about CFS and ruling out other conditions: http://www.aafp.org/afp/2002/0315/p1083.html

 

But mate, you'll be okay. Seems like tapering off of Z drugs and getting tested for other things might be your best bet. Wouldn't it be nice if it was something as simple as anemia or low hormones?! You never know, right? Just wanted to let you know I've been in somewhat of the same situation. The flu like feelings, a doc that ignored me, and feeling crazy. Take care of yourself, this could be temporary.

 

thanks mate...yes CFS is very complicated and I think I am close to understanding my own case after years of research. I studied neuroscience and immunology at Uni so I was quite well placed to do some work on it. If only it were as simple as a single hormonal imbalance. For me its mainly due to my Hyopothalamic adrenal axis being constantly over stimulated - due to a variety of causes.

 

By the way Im not always angry! Just right now - Ive been 'extremely' patient dealing with my travails - and if anything have not complained enough - just stubbornly keeping my head down and trying to work through it...but this withdrawal is really testing...

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It's okay to be angry. SSRIs, if you can handle them, are used to treat  HPA axis dysfunction. So this is like a too high cortisone problem ??? (Asking, I don't know!)
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It's okay to be angry. SSRIs, if you can handle them, are used to treat  HPA axis dysfunction. So this is like a too high cortisone problem ??? (Asking, I don't know!)

 

thats interesting can you point me in the direction of any literature that talks about HPA axis and SSRIs?

 

So is it a fools errand to consider suing the nhs?

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Stress and disease

 

The HPA axis is involved in the neurobiology of mood disorders and functional illnesses, including anxiety disorder, bipolar disorder, insomnia, post-traumatic stress disorder, borderline personality disorder, ADHD, major depressive disorder, burnout, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, and alcoholism.[5] Antidepressants, which are routinely prescribed for many of these illnesses, serve to regulate HPA axis function.[6]

 

http://en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis

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Here is another pretty good link.

 

[nobbc]http://www.nature.com/npp/journal/v31/n11/full/1301076a.html[/nobbc]

 

"edit to remove commercial link"

 

 

 

It doesn't mention SSRIs but talks about some older ADs.

IMHO these drugs should never be taken long term, but as a slight course correction.

 

There is also some very interesting research done by Perseverance In a thread called "peripheral neuropathy" under Chewing The Fat. Interesting stuff about Alpha Lipoic Acid.

 

Flip

 

edit mistake

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Stress and disease

 

The HPA axis is involved in the neurobiology of mood disorders and functional illnesses, including anxiety disorder, bipolar disorder, insomnia, post-traumatic stress disorder, borderline personality disorder, ADHD, major depressive disorder, burnout, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, and alcoholism.[5] Antidepressants, which are routinely prescribed for many of these illnesses, serve to regulate HPA axis function.[6]

 

http://en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis

 

thanks. I knew anti depressants are prescribed for these conditions but I actually thought it was palming it off under the umbrella of 'depression'. Ill have to read that paper if I can be bothered. Sadly for CFS they are generally not effective. I remember now I did a stint on them in the early days...Honestly knowing about pharmacology - introducing synthetic drugs into the body is like trying to do surgery with hedge clippers. The bodys is so exquisitely balanced and flowing. Pharmacologists just stubled accross a lot of these drugs and barely understand their mode of action. Ive realised working with the bodys natural healing ability, with mind body and energy treatments - is far more beneficial for more chronic health issues.

 

rant over! Thanks for the posts DaveyP..

 

Here is another pretty good link.

 

http://www.nature.com/npp/journal/v31/n11/full/1301076a.html

 

It doesn't mention SSRIs but talks about some older ADs.

IMHO these drugs should never be taken long term, but as a slight course correction.

 

There is also some very interesting research done by Perseverance In a thread called "peripheral neuropathy" under Chewing The Fat. Interesting stuff about Alpha Lipoic Acid.

 

Flip

 

Interesting stuff thanks...honestly - Im not sure I would take anything to regulate my HPA axis broadly. There are reasons why my HPA axis is overstimulated at the moment and I need to work on the root cause. A lot of these health conditions have a psycho-emotional root. Dulling the physiological symptom only really masks the issue if it works at all.

After being a very scientific person I have over the last 5 years slowly started to see how our bodies exist on many levels from physical, mental, emotional and spiritual...

 

This guy called Dr Klinghardt has a very fascinating and integrative outlook on medicine.

 

http://www.klinghardtacademy.com/5-Levels-of-Healing/

 

The job I speak of above was working (in marketing and also training) at a alternative health clinic in London - and they base a lot of their philosophy on his work and Ken Wilbur.

 

http://theoptimumhealthclinic.com/

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Sorry you are feeling so poorly, the fatigue from withdrawal is awful let alone CFS. I was wondering what you mean by 'energy' treatments?
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Sorry you are feeling so poorly, the fatigue from withdrawal is awful let alone CFS. I was wondering what you mean by 'energy' treatments?

 

thanks-yeah the withdrawals plus CFS is a challenge! With CFS you get a lot of random symptoms like pain etc - and the withdrawal has amplified them all.

Energy treatments I mean things like EFT and stuff like acupuncture and shiatsu...EFT is pretty amazing and I do believe a lot of physiological issues can have an emotional root - or at least - an emotional component running alongside. EFT combines emotional targeting and stimulation of acupressure points. Sounds wacky but it does work if done well...

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Stress and disease

 

The HPA axis is involved in the neurobiology of mood disorders and functional illnesses, including anxiety disorder, bipolar disorder, insomnia, post-traumatic stress disorder, borderline personality disorder, ADHD, major depressive disorder, burnout, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, and alcoholism.[5] Antidepressants, which are routinely prescribed for many of these illnesses, serve to regulate HPA axis function.[6]

 

http://en.wikipedia.org/wiki/Hypothalamic%E2%80%93pituitary%E2%80%93adrenal_axis

 

thanks. I knew anti depressants are prescribed for these conditions but I actually thought it was palming it off under the umbrella of 'depression'. Ill have to read that paper if I can be bothered. Sadly for CFS they are generally not effective. I remember now I did a stint on them in the early days...Honestly knowing about pharmacology - introducing synthetic drugs into the body is like trying to do surgery with hedge clippers. The bodys is so exquisitely balanced and flowing. Pharmacologists just stubled accross a lot of these drugs and barely understand their mode of action. Ive realised working with the bodys natural healing ability, with mind body and energy treatments - is far more beneficial for more chronic health issues.

 

rant over! Thanks for the posts DaveyP..

 

Here is another pretty good link.

 

http://www.nature.com/npp/journal/v31/n11/full/1301076a.html

 

It doesn't mention SSRIs but talks about some older ADs.

IMHO these drugs should never be taken long term, but as a slight course correction.

 

There is also some very interesting research done by Perseverance In a thread called "peripheral neuropathy" under Chewing The Fat. Interesting stuff about Alpha Lipoic Acid.

 

Flip

 

Interesting stuff thanks...honestly - Im not sure I would take anything to regulate my HPA axis broadly. There are reasons why my HPA axis is overstimulated at the moment and I need to work on the root cause. A lot of these health conditions have a psycho-emotional root. Dulling the physiological symptom only really masks the issue if it works at all.

After being a very scientific person I have over the last 5 years slowly started to see how our bodies exist on many levels from physical, mental, emotional and spiritual...

 

This guy called Dr Klinghardt has a very fascinating and integrative outlook on medicine.

 

http://www.klinghardtacademy.com/5-Levels-of-Healing/

 

The job I speak of above was working (in marketing and also training) at a alternative health clinic in London - and they base a lot of their philosophy on his work and Ken Wilbur.

 

http://theoptimumhealthclinic.com/

 

About that Dr. K: http://scienceblogs.com/insolence/2010/03/your_friday_dose_of_woo.php

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ha!

 

honestly if I had a dime for every sceptic Id be a rich man. But just because something has not been proven in scientific studies does not mean it doesnt exist. Western medicine takes an age to progress and attitudes like this only slow change. His writing is a little childish I think...for the things he is taking a poke at - there is sensible arguments for if you are able to unshackle yourself from a purist standpoint - and there is increasing scientific evidence for things like bio-photon fields....In this guys mind - there is western medicine and 'woo'. Wow.

 

I know this as an ex sceptic - and ME/CFS is a very hot topic. In order to get better from this illness I had to open my mind. Over the years I now have met myself at least over 50 people who have recovered completely from ME/CFS using what this fellow would consider 'woo' techniques.

However the clinic I worked for are funding independent clinical trials -because that is whats required in the UK to get NHS funding and free treatment for sufferers-which is the ideal outcome. Now if you were to ask me 'how many people do I know who have recovered from purely western medical interventions' I could only say only 1 anecdotally.. I 'heard' of one guy who recovered and had SSRI as part of his recovery-which as far as I can tell is very rare.

 

The western medical model fails people every day for many many different conditions. Yet despite people suffering and lack of understanding, people getting better through alternative treatments, guys like this - still clutch it to their chest as some sort of shield from fear of not understanding or anything interfering with their belief system.  The worst part for me is - that there are patients who avoid treatments that could really help them - because of this type of attitude...

 

Ive seen Klinghardt at work - and his work and methods are astonishing and frequently backed up by scientific testing if need be. 

 

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Hi Swan,

 

I'm sorry to hear you're having such a bad time right now. I have CFS also and often feel at the end of my rope dealing with it plus benzo withdrawals. Some days I really don't know how I'm going to get by (currently being supported by my parents at age 31). I'm sorry you lost so much of your life recently. It is maddening. I don't think suing the NHS would probably get you anywhere, but I totally understand your anger. Also benzo withdrawals can mess with your emotions and amplify them.

 

I can't tell from your signature how long you've been off Valium. 6 weeks? That sounds like a pretty quick taper. How are your withdrawals?

 

-anago

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Hi Swan,

 

I'm sorry to hear you're having such a bad time right now. I have CFS also and often feel at the end of my rope dealing with it plus benzo withdrawals. Some days I really don't know how I'm going to get by (currently being supported by my parents at age 31). I'm sorry you lost so much of your life recently. It is maddening. I don't think suing the NHS would probably get you anywhere, but I totally understand your anger. Also benzo withdrawals can mess with your emotions and amplify them.

 

I can't tell from your signature how long you've been off Valium. 6 weeks? That sounds like a pretty quick taper. How are your withdrawals?

 

-anago

 

hi anago - thanks for the comments  - so good to hear from someone who knows what CFS is like. I agree its a tough one having to be back home - its something Ive tried to avoid since I got ill - but this experience has forced my hand. I turned 30 last august. Things were starting to make sense after a lot of work and I started to feel optimistic - then this happened. To be honest - living in London with CFS independently has actually been really hard tho. The benzo withdrawal has amplified my emotional stuff and this has impacted my CFS symptoms...I used to feel at least I was handling the CFS difficulties well with courage (from age 24-now) - but when I hit the benzo/zopiclone difficulties - I fell to pieces.

On what basis where you prescribed benzos if you dont mind me asking? For me it started with a course of Zopiclone to help my sleep...and I ended up taking it too regularly for too long...

 

Forgot to answer - yes I tapered off in 6 weeks. I thought as I had only been on it a relatively short time - it would be ok. Thing is - I pretty much felt like I was experiencing constant symptoms from the drug anyway - so I figured it couldnt be too much worse. I also just wanted to get it done. It difficult to know if that was the right decision now-I didnt realise it could take months...docs said it wouldnt...The general withdrawals have not been great but I could have handled them if it were not for the way it seems to be interacting with my CFS symptoms-specifically my back pain.

I get this burning back pain (which is like a lactic acid build up at the base of my spine) which is a sort of overzealous stress response from my body. It can go from a slight tension but then build to what feels like a red hot poker held on my lower spine. It gets triggered by emotional issues - and seeing as Im freaking out over things I never used to pre-benzo - this symptom keeps getting triggered to a more frequent and powerful degree. On a deep level - anything my emotional brain can construe as a threat relating to my past - it triggers this response. It makes sense to me - but its really hard to manage and I can go thru days of pain, tension and poor sleep...I had to switch my mobile off and close myself off to avoid being triggered. Its a tough blow to take when you have been struggling to build a life and recover from CFS for 7 years. I suppose Im so angry because Ive had to try so hard with the CFS...Im sure you know - living and recovering from CFS is not easy - takes a lot of strength....

 

 

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Swan and Anago--I have never had CFS, but am concerned that the stress this w/d is doing to my body may be triggering something along those lines.  I have been experiencing debilitating muscle weakness and fatigue the last week.  It hit me after I dropped my Ativan dose.  I suffered flu like sx for a week (lots of head burning stuff), chills, etc.  However, no fever and it wasn't a "real" flu.  Then I was hit with MAJOR weakness and fatigue which has lasted over a week now.  Some days it is so bad I can't even lift my head off the pillow.  I also have awful insomnia with it that has been going on since I have been getting off these drugs.  I am so exhausted and when I do sleep a little I don't feel refreshed at all.  It is a task just going from one room to the next and I want to lay down.  I am NOT depressed.  I love my life and am fighting to get it back.  I am wondering if all this stress on my HPA Axis is triggering CFS.  I also have been having other HPA Axis problems--heart palps, GI Issues, etc.  I know these are all benzo w/d symptoms but the fatigue is taking the cake lately.  I keep thinking I will wake up and have normal energy but I never do.  It's been going on over a week now!  I have 2 very young children and am 33.  I had to hire childcare to help me with them because I don't have the energy.  Also been getting weird headaches for the last week.  I am still taping off Ativan and Valium as the crossover was too rough on my system.  I was only on these drugs a short time initially and have been having so much difficulty getting off.  I am wondering if my HPA Axis was vulnerable to begin with.  I have also been reading about mitochondrial damage and how it is associated with CFS and am seeing a pattern there too.  I am obviously terrified, as I took these drugs for 7 weeks initially to help get over some situational anxiety last October--which has resolved fully.  Never had ANY fatigue/muscle/insomnia problems in the past!  The drugs have been causing all of that!  Do my sx sound like CFS?  What can I do to protect the mitochondria?  Is there hope if it is CFS?  Will I ever be normal again??  It's good to hear some people have been cured.  I cannot believe I am going throug this.  I feel badly for your situation too.  What a mess.  I want to sue my doctor too but more than that I want my life/health back!
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