Duloxetine no no....!: Well, I tried it... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Duloxetine no no....!

Blackwitch profile image
44 Replies

Well, I tried it and really didn't realise how depressed and anxious it made me until my husband mentioned it! I stuck with it for 3 weeks and that was it. I phoned the hospital and they noted yet another medication I've had a bad reaction to. The trouble is that the anxiety has hung on to the point of panic attacks. Nothing really bad but I haven't been able to go out unless it's doctors or hospital (for my Depo-Medrone jab).

It's a big day tomorrow. 'The Day of the PIP Assessment' 😱😱😱 I just hope I can make it out of the house!

The good news is, I had confirmation that my Blue Badge renewal has been accepted. xx

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Blackwitch
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44 Replies
Robbie138 profile image
Robbie138

That’s something positive then, hopefully you will be ok tomorrow. Good Luck 🍀 x

Blackwitch profile image
Blackwitch in reply to Robbie138

Thank you Robbie x

YASMINTINA profile image
YASMINTINAFMA UK Volunteer

Hi there hope your accessment goes okay , I was put on sertraline which sent my anxiety sky high I’ve been on duloxtene 60mg for few weeks but it’s really helped me, it just shows how different meds work for one person and not another and it’s not to have a reaction and I do hope you get something that works for you very soon. Blue badge brilliant news. Sending my best wishes xxxx

TheWhyGirl profile image
TheWhyGirl in reply to YASMINTINA

I was on 20 mg Duloxitine for years then taken off pregablin and tramadol for pain, so duloxitine was increased to 60 mg. I ended up with vertigo and high blood pressure and gradually came off it. Withdrawal is the worst! I was taken into hospital to come off several drugs at once, which was tough but nothing less he coming off duloxitine - 6 months later and my stomach still hasn’t settled, and for first 2 months constant diahorrea and nausea. Keep an eye on side effects, they don’t just st happen when you start taking them, though you’re right, we all react differently.

SusieJo1948 profile image
SusieJo1948

You are so right duloxetine is a no no it made me feel very weird I only lasted 2 weeks. I've tried others and they didn't help so I refuse to take any more antidepressants. I take pain meds and muscle relaxers. I have tried every thing so I guess I will live with this pain the rest of my life. I'm so sorry it didn't work for you. I so hope you can find something to help you. Susiejo1948

YASMINTINA profile image
YASMINTINAFMA UK Volunteer in reply to SusieJo1948

Hi there although I feel it’s doing it’s job with making me feel relaxed I’m seeing my doctor after a long gap I value his opinion and I want to know if he thinks this is the right med because it has a sedative as many antidepressants do I also wonder if it could be making my fatigue worse they say it supposed to help with the actual fibro side of things not too sure on that either so take prescription codiene but not every day, so hard isn’t it to try and get something that’s helps but not take all symptoms away. I do worry when I read that medications can damage our bodies . Never took anything much till fibro/cfs we’re diagnosed. Take care

WorldOHurt profile image
WorldOHurt in reply to SusieJo1948

I also had to go off it after 1 month. I got the most weird head/stomach

sick feeling than I have ever had. Not like a headache or stomach ache, but very strange. I knew I had to get off duloxetine immediately,

Gram214 profile image
Gram214 in reply to SusieJo1948

Yes but.....the pain meds are being taken away from us ...then what will we do ?

My pain management gives me a new pill every month to try. He knows the hammer is coming down on good ol' cheap pain drugs with only a few side effects and safe if you're careful. But they are trying their best to force us to take new expensive drugs with more side effects than you can shake a stick at and in my state they're also nudging us to turn to cannibas which once was frowned highly upon ! This is so frustrating ! Gram214

SusieJo1948 profile image
SusieJo1948 in reply to Gram214

Gram I'm in us and there also trying to take our pain meds I honestly don't know what we're going to do. If they take pain meds away there will be a lot of people buying off the street and dying from meds mixed with fenatal which is a strong pain med and very dangerous or there will be a lot of suicides because people won't be able to live withthe pain. I feel as if we're being punished for something we didn't do. Wete not the ones out there taking drugs off the street. But we're being punished for what others are doing buying meth heroin and whatever else liken our pain meds they were selling on street. It's totally unfair to us. God help us. Love susiejo

Blackwitch profile image
Blackwitch

Thanks Susiejo1948. I've been taking Amitriptyline for a long time. I'll just stick with that, morphine, my steroid jabs and the odd Diazepam for muscle spasms. At least I know where I am with those. I just live in dread of them taking away the morphine. Yes, I think you get to the stage where you just want to be left alone and not feel like a guinea pig! x

WorldOHurt profile image
WorldOHurt in reply to Blackwitch

Do you mind if I ask you what dosage of morphine you take? Also do you take it in pill form?

Blackwitch profile image
Blackwitch in reply to WorldOHurt

Hi WorldOHurt. I usually limit myself to 7.5 ml of liquid morphine in the morning. By the time I get downstairs my legs are totally on fire. I can then sit & relax (!) for a while. I tried patches but they made really sick and I've also tried slow release tablets which also made me sick. I have degenerative spine disease as well as RA & Fibro and I'll take more later if I need it. I also have Diazepam if I need them for muscle spasms. x

WorldOHurt profile image
WorldOHurt in reply to Blackwitch

Thanks.

Lianne profile image
Lianne

Good luck tomorrow with your pip duloxotine made me feel really depressed I’m back on citalopram now and I’m starting to feel more settled xxx

Blackwitch profile image
Blackwitch in reply to Lianne

Thanks Lianne. I can't sleep now but better try or I won't be able to speak tomorrow. Hubby at the ready with his clipboard! 😬 x

Lianne profile image
Lianne in reply to Blackwitch

Really hope it all goes well for you hun. Glad your hubby is there to support you .Night night and good luck 😉 xx

mattoid-mags profile image
mattoid-mags

Hi TempleofDoom,

I just want to wish you good luck for tomorrow. I hope your assessment goes well for you 🌸🌹🌸

Remember on your pip assessment that they ask you in minuets how far you can walk not in meters I had mine 3 weeks ago second time round and because I said I could walk for 3 minuets they took my mobility away What ever you do make everything as it is your worse day these people are not nice and are watching your every move Study your booklet learn what you can They don’t want to give you anything , I can hardly walk So good luck.

catherine19611 profile image
catherine19611 in reply to

Agree with everything you say, they also throw a strange question in to try to catch you out, be aware, they asked me about my cats and if they had a litter tray, they asked how I managed to clean it out. very crafty people.

in reply to catherine19611

They always try to catch you out

Blackwitch profile image
Blackwitch in reply to catherine19611

I've got to get there first! ☹️

in reply to catherine19611

How the heck did they know you had pets ?

catherine19611 profile image
catherine19611 in reply to

they asked me who I lived with and when I said I lived alone they asked if I had any pets

in reply to catherine19611

They are so bad now

Anita54 profile image
Anita54 in reply to

Hi Cromedome, I recently had my first PIP assessment at home and apparently I said "I drive, and I reported that I can walk the 35metres from my front door to my car ?? I don't have a car !! And the walk from my front door to a taxi, lift etc is 4.5m, also they report on my physical examination ?? I didn't have one , they lie and fabricate the whole thing, and now didn't get awarded enhanced PIP and only for 3 years, whereas I had High rate DLA for an indefinite period. I have chronic pain from Fibromyalgia, Lumbar compensated scoliosis, Thoracic Kyphosis, Arthritis in both feet , Carpal Tunnel left and right, frozen shoulder of 7 years, sciatica very often, Reynaulds phenomenon, Thrombophlebitis, and possibly restless leg syndrome in bed, I don't actually know how one person can get so many problems, but clearly am not bad enough, rant over, Iv not put anything on here but been reading people's posts on and off for 3 years, this assessment situation has really got ridiculous, they just make it up as they go along !!

in reply to Anita54

The one thing I Learnt along time ago was to keep your doctor and specialist reports going all the the time your ill you will have to get a doctors letter and appeal to them and it must have all your diagnoses in the letter

Anita54 profile image
Anita54 in reply to

Iv been doing this but as pain clinic, othopeadics etc all discharge me as nothing else to offer I have little "recent "

evidence, Iv atmo been referred to pain clinic again as have worsening neck pain the MRI report says problems at C1,2,3 and 4 so pain clinic are now offering me a Lidocaine Infusion however it's being held up as the blood tests Iv had to make sure blood is healthy, of course, why did I think any of me could just be normal for once, I'm anaemic and low in other areas, on iron to see if improves then will have the treatment, but thanks any advice is welcome, I'll get on to my GP and see if she has the report from pain clinic yet, but she has already filled in the form PIP sent her.

in reply to Anita54

I don’t think the pain clinic will help you I think its best you go to your doctors and get her to complete a letter with all you diagnoses etc these people want a lot now

Anita54 profile image
Anita54 in reply to

Will do thanks, I'm actually exhausted with this already, feel like giving up 😢

in reply to Anita54

No your be ok It’s totally unfair I know how you feel Iv just had my mobility taken away too Just call pip tell them your not happy and going to appeal Go to doctor get them to do the letter your be fine x

Anita54 profile image
Anita54 in reply to

Will do but I have to ask for a mandatory reconsideration first, so Iv got an appointment st CAB next Thursday as apart from calling them liars I don't know how to approach the discrepancies 😤

Anita54 profile image
Anita54 in reply to

Hi all, so Iv Done a reconsideration with the help from the CAB, my GP says she's already filled their firm in that they sent her, We listed a few inaccuracies that Iv mentioned before and surprise surprise they came back saying the same and quoting the same reasons ie: 35m long drive that I can walk to my Automatic car with no problems, completely ignoring me correcting it to a 4.5m path to a car that I don't have, unbelievable !! Oh and apparently I have never considering suicide nor had psychiatry counselling when at a previous ESA f2f they asked me and I said yes, I then signed a form allowing them to tell my GP. Also part of my medical evidence was a letter from the pain clinic psychologist that I was seeing for over 6 months last year, where he stated that I said "I don't want to live another 30 years like this !!! Going back to CAB next week to do the appeal but don't think I can deal with being basically called a liar, when in fact it is the assessor that came to my home is the LIAR, I read on someone's post that you can do a complaint to ATOS anyone know how this goes or if it's even worth it ?🤔

Blackwitch profile image
Blackwitch in reply to Anita54

.... and the more disgraceful programmes they have on TV about 'benefit scroungers', the more DWP get away with treating people with disabilities as an underclass that are non-deserving of any empathy or chance of leading a decent and comfortable life....🤬 We are easy targets. Yes, one day I might go down the garden to hang some washing out - one day it may as well be on the moon. Their unacceptance of fluctuating disease is a joke. Oh, & the non-recognition of multiple diseases? No, you can't possibly have more than one thing wrong with you! 😱😱 I'm just working up to a good rant ........ 🙈 xx

Mdaisy profile image
Mdaisy in reply to Blackwitch

The problem is people believe the rhetoric when the amount of money lost to fraudulent claims is a drop in the ocean compared to tax evasion, but nobody seems to want to tackle the elephant in the room. Everyone seems to oblivious to the fact that finances has a direct correlation to how well you can live and actually cutting benefits doesn't help sick people, as they need more to get the services they require that aren't delivered by the NHS to live well. But no let's squeeze the vulnerable people so they are living hand to mouth going without medications, food etc in some cases because this takes the strain of the NHS doesn't it??!! *slight sarcasm there sorry. It is clear to me but not to others who seem far to detached to see the wider picture!

Blackwitch profile image
Blackwitch in reply to Mdaisy

Ooo, we could get a right one going on here! Just had a WhatsApp rant with my sister, 5 years older than me who is also disabled but left her bungalow in a small village to live in a house with our Mum (aged 91) who has Alzheimer's. She is my Mum's full time carer but won't claim any benefits. She thinks she's not bad enough herself!!!! Of course she can claim but she's been watching these awful programmes on TV. I've just sent her the pie chart (it's a few years old) that CAB did. It's just evil that a government in this day & age can create such poverty. It's nothing short of a scandal - child poverty, rough sleeping, food banks and then say that everybody should be working.

Claim, claim, claim. Then if you have no luck, ask for a reconsideration. Get help wit all the form. No luck? Appeal, appeal, appeal. There we go, I've got to do it now! 😈 x

Anita54 profile image
Anita54 in reply to Blackwitch

Rant on ! It's how we all feel 😡

Mdaisy profile image
Mdaisy

Good Morning

Hope your PIP Assessment goes well later today, here's a link to CAB online about what to expect;

citizensadvice.org.uk/benef...

My main advice would be avoid saying 'good' & 'bad' days and instead opt for symptoms range from 'mild' , 'moderate' and 'severe' ( if this is the case for you) if they ask you to explain that they can fluctuate. This hopefully will help them to realise symptoms always present impacting on your ability to do activities of daily living, as before now when I've mentioned 'good' day for me I felt they took that as feeling completely fit & healthy on those days which is totally inaccurate! Those days are very few and far between for me now tho :(

Hope this helps

Emma :)

Blackwitch profile image
Blackwitch in reply to Mdaisy

Thank you Emma. x

WorldOHurt profile image
WorldOHurt in reply to Mdaisy

Very good idea. I usually use the scale from 1-10 to explain my pain but I also add that ever hour of the day is different.

rosewine profile image
rosewine

You are not on your own not getting on with Duloxetine I felt absolutely awful on it and after three weeks like you just had to call it a day. Unfortunately I have tried several antidepressants for the pain and sleep issues and mine of them have suited me.

Good luck tomorrow, fingers crossed for you.x

Anita54 profile image
Anita54

Good Luck for today xx

grandmama16 profile image
grandmama16

I've been on Duloxetine Cymbalta? for 18 years and I thought it was for Fibro pain and Depression I've had for many more years and tried many meds for. I'm confused. I feel better on and off....almost like bi polar, and then drop like a brick. at 74 not unusual😩. Also on opiod (Norco)which is mild. still have pain, elec shocks, numbing and tingling in hands, red blotches when I get itchy from nueropathy. I use a pres. cream for that, and I take Metformin for late onset diabetes which might be from Cymbalta. I take Dexilant for acid reflux Gerd, Two blood pressure ones, and generic 1/2 Provigil to combat daytime sleepiness. Conversly Ambien to sleep at night, sometimes Xanax in the eve instead. How I wish I could get things done And maybe enjoy something. I hardly read anymore and have tons of books. It's exausting to just take a shower and I know Parkinson's will steal hubbies abilities too which will require help and I can do very little. can't sit in corner and cry....can't even cry since antidepressants have numbed me since 41 yr. old daughter died in 2006. Her 3 girls are almost all grown now and her hubby finally remarried. I felt happy about it but no happy tears. My sis in law lost hubby to cancer in Apr...still no tears. We werevery close. It seems like FibroFog has the upper hand. No support group except here, but glad that we have the Parkinson's group once a month. May you all find your ray of sunshine. I'm so grateful for our remaining 4 and their kids, and kids. Just need more energy. Hugs and good thoughts, prayers for all, M.A.

Blackwitch profile image
Blackwitch

You've really had it tough. Hearing stories like yours I count my blessings. My husband does so much for me and yes, we were maybe a little silly rescuing a Labradoodle, the most intelligent & stupid dog rolled into one. Then rescuing a puppy (Greek Harehound) from Cyprus, the an old'ish Golden Retriever from Turkey. My husband walks all 3 on his own but they're so great to have around. When I'm sad or in pain, the Labradoodle comes & puts his head on my lap and it all feels so much better.

I'm putting Duloxetine away in a box, so to speak, with all the other drugs I've had reactions to & I never want to feel like that again. You take care Grandmama. xx

Sarahp74 profile image
Sarahp74

I went on Duloxetine after my gp recommended, I went up to 90mg, decided I needed to get off it, I used it for fibro and depression. I felt it wasn't working and I was getting worse, I've now been off it completely since Monday and the withdrawal is horrendous, nausea, dizziness, tinnitus, palpitations, visual disturbances, headaches. My gp never mentioned any of this could happen. And now looking back i know it's the medication that made me more depressed to the point i was suicidal. It's evil. I was supposed to have tapered off it to go on mirtazapine, I'm not even bothering, I've tried that many pain killers and antidepressants and none really have that much of an effect other than my co -codomol and they're the only ones I can take where I'm not in a coma.

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