ME/CFS in withdrawal support group

I have noticed that there are a few of us in withdrawal who also have ME so I though I would start a group for us to talk about the challenges that come with this.

 

I for one find it very dificult to know what is withdrawal, what is ME/CFS and for me also pre-existing spinal and muscle problems.

 

Having pre-exising severe health problem makes accepting symptoms really hard I think because it really is impossible to know whether something is withdrawal or not.

 

Anyway - just my twopence worth.

Ajusta, great to start this group! It`s difficult to live with both ME/CFS and withdrawal. Some symptoms are very similar: pain, weakness, tingling of the skin, insomnia and anxiety that comes from all this.

It's hard to live with all of this because you have trouble for two different reasons.

 

How are you? 

 

 

                     

Hiya,

 

I'm glad you found it!

 

I was doing a little better earlier today but think I have overdone things and symptoms are getting worse again now.

 

I should stop andcrest completely but it's hard to get in to a position to rest head and upper body that doesn't make spinal pain in lower back worse.

 

How are you today?

 

 

Hi ladies,

 

I also have CFS/ME and I have some other chronic illnesses as well.  It's so hard to know how much is withdrawal and how much is the CFS/ME or other health problems.  Other people who seem to be healthy otherwise and just going through withdrawal are able to have the hope of getting better and healed where I feel afraid that I may not heal because it might not be only withdrawal.

 

It's nice to be able to compare with each other how withdrawal affects us with CFS/ME. 

Hi there!

 

Indeed it is very hard when there is so much overlap in symptoms.

 

I didn't have the depersonalisation and not bei g able to feel my body or that my body is made of plastic before withdrawal so I'm hoping that will go away.

 

I also didn't have the very odd muscle symptoms I am having. I had a lit of pain but not the feeling that all of my muscles sre gripping the bones to tightly and are being oumped full of something that is making them too spingy.

 

All the other things seem very like when my ME/CFS is very bad.

Hi Ajusta! I wish you better soon!

I have my thoughts on whether my ME/CFS may actually be tolerance of benso? I had so many symptoms that no one recognized, and they are so correct with tolerance and abstinence. It will nevertheless be exciting to see if the trouble, that made me diagnose, may not be right at all? I don`t know.

I had ME diagnosis before I ever took and psych drugs but was never entirely conviced by it as a diagnosis.

 

It would be much better if they actually worked out what is wring with each of us.

 

Some people seem to have immune disorders, other heart problems, others a neurlogical disorder (it'listed as a neuroligical disorder in the International Classification of Diseases). Mine has always felt more neuro I suppose.

 

I think CFS has become a big rag bag of different things - especially after the CDC and UK shrinks decided it was psychological - we are all paying for that as a result of a systematic lack of biomedical reasearch that has resulted from it.

 

Of course ME means 'Muscle pain and inflamation of the brain and spinal cord'  - Somebpercentagebof people with a CFS diagnosis have ME by that stricter definition.

 

It's all such a mess isn't it and now we are having to go through withdrawal as well.

 

It's just awful.

 

One of my symptoms when I first got ill was an inability to sleep. That is described by Byron Hyde in 'The Clinical & Scientific Basis of ME/CFS' - it wss reported in the Royal Free outbreak in London in 1955.

 

What is worrying atm is I am right back there now I am not taking diazepam or zopiclone. I am worried thst since 1996 the only reason my sleep got sorted was because of drugs. I am literally completely unable to fall asleep again. I 'm trying not to worry about it but I hate it.

Following 👍🏻

Having both withdrawal and ME/CFS is totally horrible, it means double symptoms. Here in Sweden this diagnosis is now accepted, they no longer think it's psychic. But ... you can`t get sick pension, after a while you'll be thrown back to work, 100%!  I myself became retired for this diagnosis, but it was 15 years ago.

 

Many are healthy to 100% when everything is over, but not for us. We still suffer, and our (temporary) damage to the nervous system just doesn`t  matter better. Therefore  it's so hard to know if I'm healthy now,  or is it ME? In order to feel completely healed I have to be free from both benzo and ME. And how will it be?  But many of my remaining symptoms didn`t have me before, so I'm probably not healed from the withdrawal .This is very tough, it's just too much .

Interesting. I know I have low energy, fatigue ..what ever it when you can't do too much. I think that good start would be (at least for me) to try defining what are differencies of fatigue, depression and maybe even benzo wd driven 'low energy' - I do not even know if this is possible but maybe we should try to describe what is typical (definitions) for:

 

ME/CFS/Fatigue =

Depression =

 

What do you think?

 

I propose this because at least for me it is difficult to make segregations.

If I exclude the diagnosis of ME / CFS, and only compare with depression, I think that both parts are in a big mess. As I wrote, it may mean that the healing takes so much longer because you have two problems to be solved and healed.

 

For my part I think the difference is that with depression meditation, positive thinking and exercise can slowly but certainly make it better -at least in the long term.

But if my problems are due to withdrawal then I will immediately get a lot worse, sometimes within 5-10 minutes. I fall back, and get a very unpleasant wave throughout my body. It may take a couple of days before it passes.

 

I think that if it is due to depression it may have a positive effect, and of course the opposite if it is withdrawal.

 

What do you think Thomas?

Hi, this is what I found about CFS and depression. So it seems that there are similarities but also differencies. For me this is still mess so it is hard to me say about those. Anyway I think slow increase of nice activities would be the route forward. Many times it is hard and I need to push me to do it. One example I noticed was reading of newspapers. Eaelier I did not do it at all, then I start reading headlines and now I read already intresting articles so I think it is sign of progress despite of the fact I do not know if same of the fatigue or depression has lifted... comments?

 

https://healthyliving.azcentral.com/fatigue-vs-depression-12217563.html

 

Thomas, that you can read, and it feels interesting, is a very good sign! I still have difficulty doing it, everything feels so unpleasant. Also can`t  focus on content. Everything in newspapers is another world where I'm not included, I'm standing outside.

 

I can´t help thinking that maybe I'm really good, and that there are other health problems like ghosts. Then I'm worried I'll never be well. As we've discussed, it's hard to know what's what. But I must try to be positive, and know that it`s withdrawal and nothing else.

 

Here is a snow storm, and then I feel so bad. Can hardly turn around on the couch. Are you also sensitive to changes in the weather? Thunder is also difficult.

 

 

 

 

Hi Translator, thanks about the response. Well, I am in couch as well as it is very cold in here. -15 celsius and windy so it feels like -30 which is about -22 F. No snow storm now but is was here so maybe it came to Sweden from here 😳😳. Went out this morning to put garbage where they need to be placed. Well, it took only 5 minutes but it was already freezing...

When I went to a horrible PACE trial based CFS clinic in the UK many years sgo they used the Hospital Anxiety & Depressiin Scale to assess people.

 

I mentioned to them that asking someone with ME/CFS questions on this would give false positives for depression they hot very angry with me.

 

The CBT therapist also outright said that ME is a mental health condition.

 

For me ME symptoms and depression symptoms are worlds apart. It was easy for me to discover this when I was very depressed. The anti-depressants made the depression go away but did nothing for my ME symptoms.

 

As far as withdrawal symptoms go I have never had DP/DR, whole body numbness, every muscle in my body going in to spasm, a feeling like my bidy is made out of something inert like plastic, hypersalivation etc until withdrawal.

 

The weakness & fatigue in withdrawal feels similar to when my ME/CFS has been at it's worse.

 

 

In ME/CFS it is easy to overdo and exercise makes us worse.  I'm not sure if that's the case with withdrawal only.  I also experience unrefreshing sleep and hurt all over that regular OTC pain meds don't touch.

 

I read an article about the PACE trial that showed it actually made patients worse, not better.

It feels frustrating not to know which diagnosis causes my symptoms. Is worried that the abstinence made my basic problem even worse. But I must not lose hope because I did n`t have any of my inconvenience before all this.

Do you also experience a lot of aches and tingling in the skin even if it has been a while? It also feels in the hands that are weak.

Hi Translator, I feel aches and also my arms and hands feels weak. I booked physical terapist next week and will ask to measure my strengths. I hope it is only feeling and hopefully my muscle power is still present. I haven't done almost anything for a year to keep my muscles stength as pain and low energy has prevent me exercising. In the other hand I know that my muscles are weak in case I do not do anything for a long time so I think I need to push me to do execrcise despite it will be very hard thing to do. I have plan to start doing something this spring but take baseline measure first. Well, easier to write than do...

Dr Myhill is making a formal complaint to the General Medical Council in the UK about the PACE trial and why you shouldn't do excercise with ME - all evidence shows it make ME worse. If it makes you feel better you don't have ME.

 

You can see her talking about it here:

 

You can read about here complaint here: http://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors

 

The PACE trail has affected the treatment you have received for ME/CFS where ever you are in the world because the thinking behind it has been rolled out.

 

There are a number of commentaries about it on here: http://www.virology.ws/2015/10/21/trial-by-error-i/

 

Before withdrawal I was pushing myself to try to exercise because I am desperate to help my spinal problems so it is difficult to know if some of the severe neuro symptoms I now have is because I have pushed myself in to severe ME.

Thanks Ajusta, good piece of new information for me!

Thomas! We just have the same mindset, and seem to be in the same situation. I suspect there's really nothing wrong with our muscle strength (in that case when my sofa is both my best friend and enemy). So I don`t  think our muscles are despondent as in a "real muscle disease". If they were to test strength in our hands then it would probably be okay. But at the same time it`s very weak .... This is hard to explain to others, weak but still not.

Thomas! We just have the same mindset, and seem to be in the same situation. I suspect there's really nothing wrong with our muscle strength (in that case when my sofa is both my best friend and enemy). So I don`t  think our muscles are despondent as in a "real muscle disease". If they were to test strength in our hands then it would probably be okay. But at the same time it`s very weak .... This is hard to explain to others, weak but still not.

 

Yes! You wrote it very well. We are in the same situation. I will tell next week what my strength test results says. I have test on Wednesday.

Hi all,

 

I'm an interesting case in that I have a CFS diagnosis - but my symptoms emerged following an abrupt cessation of long term SSRI usage. I started young. Was on for a decade. And I had followed doctor's orders to stop and suffered terribly for it.

 

After this experience, typical CFS symptoms manifested, worsened and continue to this date.  They did not resolve with reinstatement. It was like my nervous system took a hit it could not recover from.

 

I feel that psych drug withdrawal can sometimes cause neurological damage identical to CFS caused by other illnesses/viruses/etc.

 

 

Perhaps it's not "pure" CFS/ME, but based on symptoms it is absolutely identical. I've been housebound for a year.

 

I wonder if there's anyone else out there who shares my story?

 

 

Take care a