My story & want to get off meds, cold turkey?

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My story & want to get off meds, cold turkey?

Postby SAS1961 » Thu Nov 03, 2016 1:36 pm

Hi everyone,
This is my first post so here goes.
I am a 55 year old female ( Used to feel 30 now feel 75) My short medical history, Had a discectomy in 2001 which was exremely successful as I could barely walk prior to the surgery. No problems until September 2015. I had been having a bit of pain in my shoulders & neck. Woke up one morning & couldn't lift me head off my pillow. Decided to go to my local Walk in Centre. They did xray & rang for an ambulance straight away saying that they thought I had fractured my neck. Royal Free hospital did the usual Xrays, CT, MRI & about 50 blood tests. They said I had an infection in the discs of my spine which is very rare. After a week sent to Nurological Hospital in London where they did more tests & a biopsy which came back clear. Sent me back to Royal Freefor a week & tried for a week to grow my blood to see what type of infection I had, Nothing grew????? They decided 3 weeks later to put a mid line in my arm (A narrow tube under the skin from my elbow up my arm to my chest) They taught me how to administer an intravenous antibiotic & sent me home. I had to do this twice a day for 6 weeks. Now I think this is when the FM came into play. Went to my GP After a couple of months & they referred me to Rhumatologist. They then diagnosed me with FM & ostioarthrits about March this year. I now wonder if thats what it was all along.
Had all the usual tests & have been on Duloxetine 60mg AM & PM. Zapain 30/500 (coedine/paracetamol) In the beginning it seemed to take the edge off. I am now lucky if I get dressed or go out at all. I will go out with my lovely partner who is incredibly supportive. I went out alone a few weeks ago & it put me in bed for 2 days. Now I am seriously considering going off the meds as I feel they are just not working anymore, has anyone gone cold turkey & if you have experienced it how did it go & did your FM get any worse? Thanks for listening & look forward to hearing your opinions.
Best wishes & hugs xxxxx
SAS1961
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Re: My story & want to get off meds, cold turkey?

Postby *Lisa* » Thu Nov 03, 2016 2:27 pm

I would speak with your GP or a pharmacist before you decided to come off them and how to come of them safely without any withdrawl symptoms.

:goodluck1:
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: My story & want to get off meds, cold turkey?

Postby SAS1961 » Thu Nov 03, 2016 2:41 pm

Hi Lisa
Thanks for your reply. What you say is exactly what I should do. Its difficult to talk to my Dr as they don't seem to even want to acknoledge the FM, they alway refer to it as ostioarthritis. Even though they have been advised of the diagnoses by the Rhuematologist. The sooner these kind of Doctors start to get educated the better. I finally have an appointment with the apain clinic in mid Decemmber which was requested back in late August. The other thing is that I am also A Diabetic & that was so well under control before the FM. Would love to hear from other diabetics to see if the FM affects there glucose levels
Keep smiling & thank you
SAS1961
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Posts: 6
Joined: Wed Nov 02, 2016 12:26 pm

Re: My story & want to get off meds, cold turkey?

Postby perseus » Thu Nov 03, 2016 2:50 pm

Welcome to the forum SAS

It's not uncommon to find that meds work initially then the benefits quickly wear off. I recall my first medication was Amitriptyline which worked fine for the first month or so but the pain came back after a spot of decorating so I stopped taking them. I have taken Duloxetine for ages now and I'm frightened to come of it since my pain is at least manageable. As well as the benefits, or lack of in your case, the side effects are another consideration. As Lisa says you should discuss with your GP first before changing medication though. Have you considered asking if any other Doctors in your surgery are more sympathetic?
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia. Regards Stephen
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Re: My story & want to get off meds, cold turkey?

Postby SAS1961 » Thu Nov 03, 2016 4:29 pm

Thanks for your reply
Yes I saw the other 2 Drs & they tried me on gabapentin but it was awful, I was dizzy, confused & worse than ever so they put me back on the Duloxetine & upped the dose to 60mg AM &PM. I know it is early days for me really but I have such a hatred of meds, I guess what I am wondering is if I quit the Duloxetine & maybe just took my Zapain I would be any worse off? I guess I would have to try it to know. I am so pleased I joined this site as it is so helpful reading peoples stories & at least know that I am not alone as I have felt lately. Does anyone have any advice or suggestions for light excercise that works for you, I know I can not do anything too strenuous, love to hear your thoughts, thanks ever so much, you are a great bunch xxxx
SAS1961
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Posts: 6
Joined: Wed Nov 02, 2016 12:26 pm

Re: My story & want to get off meds, cold turkey?

Postby SAS1961 » Thu Nov 03, 2016 4:34 pm

Hi perseus
Can I ask how long you have been on Duloxetine & does it help or have you had to up the dose?...
Cheers xxx
SAS1961
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Posts: 6
Joined: Wed Nov 02, 2016 12:26 pm

Re: My story & want to get off meds, cold turkey?

Postby perseus » Fri Nov 04, 2016 12:22 pm

SAS1961 wrote:Hi perseus
Can I ask how long you have been on Duloxetine & does it help or have you had to up the dose?...
Cheers xxx


About 8 years! It definitely helped for some time, however a few years ago I was in pain again and a consultant suggested doubling the dose. It didn't help. However over the past year I strained my lower back and the pain moved from my upper back. I applied Capsaicin cream to that area and achieved an overall pain reduction. So I'm not sure if its worth coming off Duloxetine altogether now. Of course the Capsaicin results in a burning sensation which is itself painful.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia. Regards Stephen
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