InNeedOfHope: Cymbalta hell - is it impossible for some people?

[jr1985]

Hi InNeed,

 

I've just been reading through your thread, and I'm so sorry for everything you are going through, it sounds terrible!

 

Something I found helpful in w/d was a book by Dr Claire Weekes, called "Hope and Help for Your Nerves". It can be bought from amazon or downloaded from iTunes as an audio book. I realise anxiety is the least of your troubles, but I found her book very good, even for the weird physical symptoms I was having. Although I know my symptoms weren't as bad as yours, you still may find it helpful.

 

Please remember you are not alone in this, we are here for you, and don't give up!

[InNeedOfHope]

Thank you for your kind thoughts, I am sorry I can't thank you individually, it's just too difficult to retain what everyone has said and who.

 

I haven't heard back from my GP yet. My main concern about swapping GP is this: it is better the devil you know and by that I mean she at least lets me open the capsules and other people/pharmacists/hospital doctors I have come across have been horrified I am doing this so I am worried if I swap this option would be taken away.

 

As far as I know, here in the UK you go to the GP nearest where you live. YOu can register at another one but you can't really find out their views first, it is just and admin issue. I am also worried what is written on my files (anxious etc) and don't know if I will be taken seriously.

 

I am on day 4 of drop getting progressively worse. Severe thrush has come back this week (had been gone for a month or so) my diet does not change much at all, so I know its nothing to do with that, I can't get a much cleaner diet.

 

Biggest issue is stabbing in the liver area, what feels like inflammation in the bladder and the urge to urinate constantly there,but nothing comes.From past experience an infection test is a waste of time as the last 3 came back clear. My eyes appear 'glassy' so not sure if this is linked to the liver. Going to the loo both ways is excruciating.

 

Breathing not quite as bad as last week, only a bit asthatic.

 

My GP said my liver tests were ok that was around 6 weeks ago, don't get told numbers.Again, i am worried after reading Alex's thread, as I have such a long way to go and worried my liver is going to have had enough of all this crap medicine putting in.

 

Funeral is this Thurs,my sister is kind and is going to drive me there just for the service but I am dreading it, because it will be on the worst day of the drop.

 

Barb thanks for the info, again, my rubbish notebook couldnt open the quininolone bit. Thank you for the searching you have done on my behalf. I hope you are managing ok, been thinking of you.

 

I feel so tired from pain and worry. I know I am not absorbing food properly and I am becoming malnourished, but cant process supplements.

 

Can I ask?? As far as tests go, could I have a damaged liver but the bit I keep reducing is masking that eg, when people go fast, their symtoms don't hit them until later on?????

 

I have had perfect skin reducing (not a natural state but thyroid in overdrive), I have been diagnosed with severe fibroids and had an op scheduled only for them to disappear weeks later and op cancelled. So I wonder could my liver tests be showing ok but when wd catches up with me the lower I get will it show up as damaged because of all the pain I get?????

 

Sorry for long post, will have to learn to be concise. 12.6mg 122 long beads to go....

[InNeedOfHope]

I am going to ring the GP on Friday to see if she has had chance to see if it is possible to see Dr Haddad. (Docs on strike here tomorrow, death rate should plummet!)

 

Until I can see someone who understands I have to keep trying to figure this out on my own.

 

When I took the extra tablet it was the start of the paralysis. When I went down too fast this reduced a great deal and was not noticeable. I imagine it was still catching up with me to show up later on.

 

The paralysis I have had for the last 4 drops is slowly lifting and I have more of a numbness and weakness in the left arm. My skin feels fantastic which I see as a sign of going too fast again maybe I don't know. Biggest issue this drop is still head pain (though not as severe as last week), still got this right side stabbing pain under ribs and diarrhoea.

 

I wonder sometimes if I can physically do this at all, as the lower I get the worse it gets. I hear that some people get relief from a drop at first, then feel steadily worse (drop kicking in) the better then when it goes off again they drop again. That has been my pattern since Christmas in the main. Some things disappear only to come back worse again. As I can't make one big 1mg drop or even 0.5mg, I wonder if when I drop in 0.2mg increments I still get the same pattern but more broken up.

 

If that is the case then I am coming out of a really bad phase and I am at the start of dropping and going too fast again. I find it so hard to work out as I NEVER reach a feel good time, but then again, I didnt ever feel 'right' on it from the start, so in a way that makes sense, because as I start to adjust to a drop, I am putting more of it in my body. It is hard to slow down because drops bring relief at first and sometimes my breathing and chest compression is so bad I cant stand it anymore and I drop to get relief.

 

I have been reaching my limits in what pain I can take and what compression in the chest and left side I feel is safe without going to hospital. (which i avoid at all costs) If it is going to get worse I don't know what to do.

 

Feeling very low today, I keep trying to distract myself researching craft stuff I could make to sell on ebay when I am strong enough to give me something to think about, (always loved art) but today on day 5 mood is low as well as pain being bad. The funeral tomorrow is on my mind too.

 

CITA try to reassure me that if anything was permanent then it would not come and go. It would always be there, but I have to say I have had this liver pain a while now. I have to be thankful paralysis is not as bad as last week.

 

Hope everyone is managing ok today

[InNeedOfHope]

jr1985 - I think I might have read that book, thanks for suggesting it maybe I will go back and look it up again.

 

strawberry17 - I see you are from the UK have you ever changed GP? I realise if I change, my family have to come with me.

 

Nikki - the oatmeal was soothing, a local herbal shop does in in bags with lavender in it.

 

drb - I have begun keeping a more detailed diary again to help myself and to see if any pattens do emerge, I so wish and hope that a doctor who understands this might be getting nearer

 

xDebbiejo - I had thought about calling Mind but as CITA help me and there is nothing new they can suggest and they deal with withdrawal, I didn't think they would be able to help but thank your for suggesting it.

 

Schuyler - I am also trying to avoid Valium, not used it now for 10 days. (that was on one day and not used it for six weeks prior to that)

 

Barb and Altostata - thank you for all your continued advice and support

 

I worked out if I kept another window open I could retain the posts to reply to!

[Barbarannamated]

"Docs on strike here, death rates should plummet!" LOL! !!! THANK YOU for an early morning laugh!! Why are they striking? Docs in US aren't permitted to strike.

 

That comment was so funny - I may have to use that on my Facebook page !

 

EDIT: Link to interesting article below. I may have misspoken about docs in US striking as it says some did. Maybe if employees of government health system or ***, they can. It may be individual docs can't "collude".

 

WHEN DOCTORS GO ON STRIKE, PATIENTS STOP DYING

http://www.huffingtonpost.co.uk/mobileweb/dr-raj-persaud/when-doctors-go-on-strike_b_1513689.html

 

Hugs!

Barb

[Skyler]

xDebbiejo - I had thought about calling Mind but as CITA help me and there is nothing new they can suggest and they deal with withdrawal, I didn't think they would be able to help but thank your for suggesting it.

 

Schuyler - I am also trying to avoid Valium, not used it now for 10 days. (that was on one day and not used it for six weeks prior to that)

 

Bonza on the diazepam.. Good Going. On your previous note, I'm having trouble following some of your responses because I don't know what CITA is?

[Barbarannamated]

Council for Information on Tranquillisers,Antidepressants,and Painkillers

http://www.citawithdrawal.org.uk/

 

CITA is a charitable organisation,established in 1987 to provide support and information for individuals,families,friends and professional advisors dealing with prescribed tranquillisers,sleeping tablets,and antidepressants.

 

As drugs have evolved so have we. Originally the Council for Involuntary Tranquilliser Addiction,we evolved to become the Council for Information on Tranquillisers and Antidepressants,and more recently the Council for Information on Tranquillisers,Antidepressants,and Painkillers.

 

Information on drug interactions has been obtained from a number of sources including,but not limited to; manufacturer's advice, observations of numerous withdrawal clinics,and information brought together during the man

[InNeedOfHope]

They are striking over pensions.

 

Death rates do plummet don't they, I think I read in Barry Groves Trick or Treat there are instances where this has been documented. I'll have a look at your link!

 

Having a really bad day, this is day five of my drop. Having lucid scary dreams again, not sleeping properly again because heart is racing (hard getting to sleep because of it and waking me up) There is a part of me that does wonder if I am making this worse by keep slowing it down and that this could go on forever and get progressively worse and more life threatening. Please tell me (adverse reaction aside) that I am not making this worse?

 

The longest period I had without reducing was in Novemeber 2011 for 8 weeks, I began to feel progressively worse and when I dropped 0.2mg, all hell broke loose and this was the start of a constant fight to need to reduce to relieve the bad symptoms.

 

I had akathesis in Feb 2012 for nine days more of less 24/7, and I slowed it down by dropping 1 bead the next drop. I managed this for one week and then I worsened.

 

I kept trying to drop by 0.1mg after that but I would last a day as it made breathing impossible and so I went back to reducing by 0.2mg.

 

Whenever I slow it down the worst of it gets better but then afterwards goes sharper and more intense and worse than it was when I was going too fast. My head is spinning trying to figure it out. I fear that if I don't get this right I am going to end up in a dangerous situation.

 

I may have said this, but I react to any changes within the hour, my brain changes rapidly.

 

Feeling so ill and weak, so hopeless seeing this pain and uncertainty stretching out before me, knowing it is my decisions over reducing that determine if I get this right or wrong. I don't want to die. This may sound dramatic, but knowing how close I came a couple of drops back to feeling total paralysis and a chest so heavy I thought I would have a heart attack. That is why I panic because I don't know if the next drop will go better or worse.I know that only stopping this medicine eventually do I actually stand a chance. The original psychiatrist said that if I delayed things I would make things worse for myself, his words haunt me.....

[TheBobbi]

HiInneedofhope

Just wanted to tell you something. I don`t know about myself but I`m sure that you`ll deffinitely recover. All people who have anxiety and exactly the same symptoms as you recovered. And there`s no doubt youll recover, youll just have to stay away from all drugs and not do the same terrible mistake I did.

[InNeedOfHope]

I wish I could believe that was true Bobbi.

 

I am now having constant diarrhoea, I am drinking plenty, I eat vegetables etc, but I know this is probably another symptom of wd, a weak immune system. I haven t been good in this area for a year, but over the last two weeks it is getting out of control, I am so sore and weak. Is there anything I can do to slow this down that won't interfere with the medicine. I know if I go to GP again on Friday she will just say hospital and CT as she is fed up with me. I wonder if probiotics could help but they give me head pain and palpitations. Each week just keeps getting worse how do I do another 60 weeks like this?

 

I have this funeral tomorrow which I am dreading too. How embarrassing if I can't sit for 30 minutes. My sister is taking me (she is very kind). Left side pain in arm and head and chest pain back too.

[Barbarannamated]

Sending virtual hugs. I can't imagine what you're going thru and seeing a close friend pass...

 

I'm sorry I dont have any suggestions regarding your symptoms.

 

Any luck reaching Dr. Haddad? I hope he is able to work with you. Even if he's not within your NHS coverage, I urge you to contact him to tell him your experience. He may want to document your case. Sorry - I don't mean to turn you into a research project He may be your personal "Dr. House".

 

There was a Physician/pharmacologist listed in the link of Quinolone wise docs who may have ideas for you. He specializes in adverse and toxic event reporting. I dont know how far he is from you. I'll find his name again. I didn't want to add confusion if you were working with Dr. Haddad. He is the withdrawal expert.

[strawberry17]

Yes I'm in the UK and yes have changed doctors but because we moved house and it was a few years ago, and we did have a choice of surgeries, not sure how you find out a doctors leanings though and I understand what you mean about sometimes it's better the devil you know.

[Skyler]

Yes I'm in the UK and yes have changed doctors but because we moved house and it was a few years ago, and we did have a choice of surgeries, not sure how you find out a doctors leanings though and I understand what you mean about sometimes it's better the devil you know.

 

Strawberry, do you think a UK advocacy group, like Mind or BAT, might be able to give some help to InNeedofHope.. info on how to, or what to do if you can't? I've been thinking for some time that she needs an on the ground type of social worker in the UK. She's just feeling so overwhelmed right now but I don't know the way things work there. ~S

[InNeedOfHope]

The funeral was very difficult but I got through it with the support of my sister who was fabulous. It must have taken alot out of me, as I had to walk a bit more than I usually do and by the night time I had a temperature, flu symptoms, increased pain and was up in the night aching and sweating (though this has gone down this morning).

 

I am perturbed by people who have broken my trust and hurt me (at some of my worst times)and who could go on to hurt me with things i have confided in them by passing them on. It is a racing thought that keeps sticking. Trying my best to distract myself and thinking that I have to be strong through this for my children. Also thinking it best never to confide in anyone again, that way trust cannot be broken, which is quite a sad thing to have to think. The thing is I have regularly trusted the wrong people when I have been in a distressed state only to regret it later. Sometimes a problem halved is not always the best option....Sorry I digress.

 

Spoke to GP this morning, who says she will write to and try to locate Dr Haddad, to find out if he is still practising, will accept a referral and if it can be funded.

 

She had no comment to make on it being the right thing to do, not interested. She is just a gate keeper. Again, this will not take 5 minutes.

 

Thanks to Barb and Schuyler for their continued interest and advice.

 

Reducing tonight by 0.2mg, 12.4mg 120 beads

[TheBobbi]

I wish I could believe that was true Bobbi.

 

I am now having constant diarrhoea, I am drinking plenty, I eat vegetables etc, but I know this is probably another symptom of wd, a weak immune system. I haven t been good in this area for a year, but over the last two weeks it is getting out of control, I am so sore and weak. Is there anything I can do to slow this down that won't interfere with the medicine. I know if I go to GP again on Friday she will just say hospital and CT as she is fed up with me. I wonder if probiotics could help but they give me head pain and palpitations. Each week just keeps getting worse how do I do another 60 weeks like this?

 

I have this funeral tomorrow which I am dreading too. How embarrassing if I can't sit for 30 minutes. My sister is taking me (she is very kind). Left side pain in arm and head and chest pain back too.

 

InNeed

I know that you will recover. The same happened to me after I was initially damaged by citalopram. The first 3 weeks where pure hell on earth with uncontrollable anxiety, crying jags and panic but after the weeks progresses I started to see improvement. I started to have short windows to my old self at night and many people who recovered experienced exactly the same things. My biggest mistake was when after those weeks I took another drug called anafranil which put me into an even more horrible state which still hasn't improved. But with you it is different, you have the same as my initial damage and Im sure you will be able to recover from it. The thing you should do after you manage withdrawel is to stay away from all drugs. The thing that made me worse was that I took another drug after I was initially damaged by the citalopram. If you stay I way from all drugs and eat healthy you will recover. And I`m sure you will.

[InNeedOfHope]

Thank you for your words of encouragement. I hope the same for you too. And I take heed at what you say about other drugs. That is why I am so fearful of hospitals.

[InNeedOfHope]

An update to where I am now. Tonight I will reduce to 9.8mg, I reduce by 0.2mg a week. So at that rate it will be another 49 weeks. It will have taken me two and half years to get off a drug I took for around 3 and a half months and even then I don't think the story will end there.

 

The doctor who I was recommended on this board, the expert at Hope Hospital, he replied he would not see me because I am out of the catchment area.(only replied a couple of weeks ago) (by only a couple of miles) and recommended I see one close to home. My GP says I have refused inpatient treatment to withdraw drug in one go so there is nothing more they can do. But that's ok, because I believe they could do nothing anyway. I don't think I have seen a doctor now for more than four months, maybe five I am not sure, but I feel better for it, so much better. I know I have a fear of doctors and always will now and even worse my children do too.

 

I have just had a referral for psychotherapy, I can't even remember who made that referral, I think it was from the pain management consultant last November. I will not be going. It's too late and mostly my problems are physical, not emotional.

 

I keep attempting to walk a bit more, but it is difficult as physical expenditure still brings pain as it has always done on this drug.

 

Improvements - My sister says my outlook and mood and stability are as they were before the medicine, if not better.She says I don't talk wd all the time and am 'normal' apart from the pain and physical disability.

 

In May/June I could sleep only 1 hour in 24, if I didn't keep moving I lost the feeling in my arms and the chest pain was unbearable. Now I sleep better, but interupted and still bad dreams, I wake up heart racing, move about and it slows down and most times I can drop off again eventually, a few months ago I could not do that.

 

Some days I can now get through the day without a daytime sleep (probably because I am sleeping better at night)

 

I have fewer periods of intense worrying or ruminating over things.

 

I no longer scour the internet looking for cures. I no longer freak out if I see a cancer related or heart issue in the paper etc. If I die, I die. I can't control that, so I don't tend to worry anymore about that etc. I am more laissez-faire and think at least I would have no more pain. Maybe thats a bit bleak but it is how I view it. I am better if I stay off the internet full stop, because I am not tempted to look up health related issues etc.

 

I can tolerate more foods than I used to in terms of getting pain when I eat (although I still have irritable bowel and pain every day) and I have put on some of the weight I lost.

 

Not so good stuff

 

Heart beating heavy and slow - palpitations - skipped heart beats much worse. All the time. Fullness in throat, shortness of breath, asthma like symptoms.

 

Pain in legs (behind knees and shins ) severe affects walking and balance.

 

IBS and thrush like symptoms terrible.

 

Eyes sore and painful, keep getting ulcers on them (didnt know you could) eye sight poor.

 

Burning head in fact burning all over makes me want to not be in my own skin and rip my hair out.

 

Cold always cold.

 

Pain in right foot and still in right side under ribs and behind.

 

Pain in left face, head and shoulder.

 

Dry skin.

 

Head pain and pressure. Sore itchy ears and throat.

 

Pain in top of stomache at centre.

 

Hair thin and dry.

 

An inability to sit for very long without akathesia type stuff settling in, especially at night.

 

Pain in upper spine and lower back.

 

Have had hives and lumps and boils , all over body, but these have subsided at the moment.

 

 

Sorry to go on, but have not updated for a while and just wanted people to see that some things get better, some worse, it is ever changing, what is different is I no longer run to doctor expecting help or advice, I stay away, cope with it and feel better for not seeing them, I despise them to be honest. (although did see an optician for my eye)

 

My career has gone, and some days I am so restless and bored, but physically can do no more. I worry for my future, it looks as if we will lose our home,and the guilt surrounding that is immense. I don't know how I will come out of this, in terms of even if my physical stuff improves who will give me a job with my history??

 

I know now my problems in April were going too fast. The thing is I needed to reduce because the immediate relief I had to have as I could not breathe etc, when I reduced the immediate kick in brought my breathign back. I felt if I didnt reduce I would wake up one day and not be able to breathe. I thought this meant my body wanted rid of the drug. In effect, I was using the 'lift' you get from reducing to get through the terrible pain. But I went too fast/ too far and the two months that followed, well, I don't know how I am still here. The thing is...should it really have taken two and a half years (and more for recovery) for a drug taken only for a short time. If only I had been taken off it immediately instead of being told to perservere.

 

Those doctors will never know what damage they did by saying my burning, head pain was 'me' and nothing to do with Cymbalta.

 

I have no respect for doctors anymore sad to say. They are not the 'God' they try to appear to be and are arrogant in the extreme.

 

Anyhow, enough moaning...I wish everyone well here and maybe someone reading this will see symptoms they are having and realise some go away.

[Altostrata]

InNeed, I'm glad you let us know how you are doing.

 

Dr. Haddad did not recommend anyone specifically? You might write him back and ask for a doctor's name.

 

Also, you should let him know how you are feeling now. Your post up above would do.

 

Sending you healing thoughts, I wish I could do more.

[strawberry17]

Thanks for the update, I had been wondering recently how you were getting on.

[Altostrata]

strawberry, is there no provision in the health system for seeing a doctor outside of catchment?

[InNeedOfHope]

Amytriptyline

 

I used this site a lot 10 years ago. Am now in a dark place. I have me/cfs. Dr made me take Amytriptyline.For pain. I started with half a 10mg tab. I took 2 days severe palpitations and stabbing pains and neuropathic pain. It did kill some pain..Stopped. Now feel some of symptoms lifting. But almost too well. When will the crash come? I know it has a long half life when will it hit me.

 

i know these amounts seem ridiculous to cause such effects but since taking Cymbalta 10 yer as ago that is how I am. I am in a desperate situation. I am declining fast and not far from being like Whitney Dafoe ans I am frightened. I am in excruciating pain every day.. please explain rebound scientifically to me. As in the reasons for high followed by a crash thanks 

 

Edited July 18, 2020 by ChessieCat
added topic title

[ChessieCat]

Hi InNeedofHope and welcome back.

 

I moved your post to your Introduction topic.  This keeps your history in one place.

 

I'm sorry to hear that you are not doing very well.

 

We need to know more detailed information about the Amitriptyline.  Please advise the dates and the doses you took it on.  Are you currently taking any other drugs?  If yes, what are they and what doses.  Please also tell us what times you take them.

 

I will ask the other mods for their assistance.

 

Also, So that we can see your drug history at a glance please update your drug signature.  This link will take you straight to your own drug signature.  Remember to click Save when you have finished. 

 

Account Settings – Create or Edit a signature

 

I suggest that you put commas between the dates/doses to make your signature smaller.

 

26th June - 26mg,

3rd July - 25mg

17th July - 24mg

24th July - 23mg

 

26th June - 26mg, 3rd July - 25mg, 17th July - 24mg, 24th July - 23mg

 

 

[Altostrata]

Are you still taking amitriptyline? What dosage? How do you feel now?

[InNeedOfHope]

Only took 5mg 5mg 2.5mg I know this is tiny but reaction massive. I should never have taken it and was bullied by dr.. feel horrendous. Neuropathic pain on top of what I already had

 

[InNeedOfHope]

I stopped the Amytriptyline and was given Gabapentin last week. 
I have reacted badly to that. Was given 3 days of 2 x 100 mg

Decided to go down to 1 x100 mg for three days as heart was racing some increased neuropathic pain in upper arms.

 

not sure whether to stop or go back up as last night jerking all over and vomiting severe abdominal pain.

 

I regret every day taking Cymbalta,

It induced the start of ME / CFS

my life is at risk as I weigh 7st and struggle to eat as too much pain.

I am doubly incontinent.

I suffer excruciating pain.

 

if you look up severe ME/CFS Merryn Crofts this will show you how ill I am.

[Altostrata]

I am sorry you're doing so poorly.

 

Many people here are hypersensitive to even tiny doses, from going on and off drugs. This may be why you reacted so badly to amitryptyline and gabapentin. Hang in there, you will slowly recover from the adverse drug reaction.

 

Are you feeling any benefit from the lower dose of gabapentin? It could be that a very low dose, such as 5mg, is better for you than 100mg.