I tried a day without meds... - Fibromyalgia Acti...

Fibromyalgia Action UK

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I tried a day without meds...

tinyblonde profile image
32 Replies

Yesterday I turned 25 and I decided on this day I'm going to be like the average gal my age and not take a gazillion meds & have some drinks. The day before I took no pain meds so I could have prosecco at a close friends housewarming (we hung out on her couch, just 5 of us so super relaxed). This was manageable, I figured I could do this on a good day if I want to grab a drink. But no meds AT ALL? Had lunch out with my family, bearable. After that? Not bearable, but I was determined. Went for a drink nearby with a friend. Went home after an hour and gave in and took my evening meds & all the painkillers I could get my mits on. Took me 4 hours to fall into a fitful sleep.

Today? Awful. Can't even pretend to smile or pretend that the pain 'isn't too bad'. I figured all of you on this forum are the most likely to understand this situation.

Has anyone ever had anything similar? Tried not taking your meds out of curiosity in the hopes that maybe you can be more 'normal'?

Hope you are all having a more fortunate Easter Monday and that you enjoyed lots of yummy chocolate eggs (and real eggs!) and time with friends & family :)

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tinyblonde profile image
tinyblonde
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32 Replies
robpw profile image
robpw

I do many days without meds - I Have then but I tend to only use them when I can’t bear the pain - I do admit I put up with an awful lot of pain

Dotpot profile image
Dotpot in reply to robpw

I’m in agony if don’t take them

rosewine profile image
rosewine

I have tried days without all my meds apart from Pregablin which has to be reduced slowly and unfortunately like you I thought I was doing ok for a few hours and then wham pain worse than ever and it would take several days to get the pain levels down at all. You have my sympathy.x

hamble99b profile image
hamble99b

happy belated birthday greetings tinyblonde! sometimes it's hard knowing what our new "normal" is; it can be very frightening and unsettling.

we wouldn't be human if we didn't want to kick back, on occasions, try to re-take our control in some small way. (keep safe)

to "be good" play by the rules may still leave us in pain,

to bend the rules slightly e.g. for me, some canned soda drinks can cause a slight flare, but I know it might and take the consequences ( as a one-off).

take care, regards, hamble :)

uggycat profile image
uggycat

Hello Tiny, I have often tried not taking pain meds for a couple of days, but because me pain is bad at moment end up not feeling to good. But for me I would not drink. x

Mads3696 profile image
Mads3696

Hi, do you mind me asking what meds you’re on? I only have naproxen from the doctor and this makes little difference for me.

tinyblonde profile image
tinyblonde in reply to Mads3696

I take gabapentin, a mix of opioids, nortriptyline, CBD oil and use a diclofenac cream, amongst various treatment & rehabilitation programs. I'm very limited due to my mix of health issues and severe drug interactions! No fun!

Mads3696 profile image
Mads3696 in reply to tinyblonde

Wow! sounds like I need to get back to my doctor and demand better support. Only thing he’s ever offered me for fibro is amitriptyline and I didn’t get on with it as just felt out of it all the time which I couldn’t afford to be with young kids to look after.

tinyblonde profile image
tinyblonde in reply to Mads3696

Its hard to find meds that work effectively/that work at all but definitely ask for better support! My physios treat me for spinal problems but created me 'Bad Day Movement Plans' and it was a huge relief that they even understood what a bad day entails. Hope you have some luck, just keep at it until they give you the support you deserve!!

Mads3696 profile image
Mads3696 in reply to tinyblonde

Thank you I will x

GMTE profile image
GMTE

I’ve tried the same and have had the same results. Was even sent home from work because I could cope with the pain and they felt bad for me

You have my sympathies. It’s awful. You want so desperately to fell ‘normal’ but it’s like we’re being laughed at 😢

moo196 profile image
moo196

Unfortunately one day without pain meds is more likely to show us withdrawal symptoms and not any true nature of us as people not taking meds. It would need to be a few weeks before drugs were out of our systems to get a true picture..... So one day is not a way to represent a possible way of bring "normal"

Interesting to see that someone mentions soda causing flare ups...... Giving up diet coke and all fizzy drinks was the best thing I have ever done for the pains.

Al10 profile image
Al10

Whether meds work or not, your body adapts to having them so it will tell you to take em by making you feel rubbish if you dont. Shame the alcohol didn't help. Now you just need to get back on an even keel. Maybe next time forget the alcohol, you are already medicated to the hilt. The point is with meds (if we can get it right) we can enjoy our lives more. And likely it's taken plenty trial n error to achieve. Maybe you should arrange a happy after birthday treat, on meds n tailored esp for you n not what a kid your age ought to want? You might have fun anyway! Yay?

mysmugcat profile image
mysmugcat in reply to Al10

I agree. I also worty interaction between drugs and alcohol. Hope OPcan treat themself soon to a belated birthday treat.

Heliboy911 profile image
Heliboy911

Out of the 23 tablets I take every day I need them all and I would not dream of not taking any of them.!!

Char_Malibu93 profile image
Char_Malibu93

Hi, I get how your feeling about wanting to me a normal 25 year old. I am turning 25 this year and would love to have a day were I didn’t take anything. I reduced my meds accidentally and I struggled, more pain and I found my mind wasn’t working so well.

I think you have done amazingly by not taking anything but can’t imagine how much pain you’re now in

brex profile image
brex

I tried going without my meds on Christmas Eve a couple of years ago..so that I could have a drink....all was going well until Christmas morning the pain was unbearable and I basically ruined the day...instead of watching my grandchildren opening their presents and joining the family for dinner..I was in bed hardly able to move even my little finger without screaming pain. I know never go without my meds. I'd rather be with family instead of missing them just for a couple of glasses of wine

Morning Tinyblonde, I sympathise with your desire to ‘be normal ‘ especially as you are so young.

Personally I can’t go half a day without taking my meds and feeling like I’ve been hit by a truck, sometimes I do this accidentally because I’m out or simply forget to take them . It’s scary that I cannot manage without them , and judging by some of the responses a lot of people feel the same.

Interesting that people mention fizzy drinks can cause a flare, I gave up lager about 18 months ago because I felt extremely sore the following day, not sure if it was the fizzy bit or the lager... though thinking about it I can feel like that after drinking fizzy wine.

Hope you continue to manage to keep your pain under control .

Love and hugs 🤗 xx

tinyblonde profile image
tinyblonde

Thanks everyone for your input! I've been on meds for so many years and tried weeks/months of no meds when I could afford to do so and it never worked out well at all. Usually I find a way to enjoy the occasional drink, when things got worse aged 17 I resented how many things I liked doing were taken away from me so I got savvy (or just stupid!). But I just wanted one day without all the tablets and the monitoring and the pill caddy, thinking the withdrawal and the pain would be bearable and a worthy exchange. Although its sad that we can't manage this way, I'm at least somewhat reassured I'm not the only one in this crapboat and people understand where I'm coming from!

Eastermary profile image
Eastermary

I didn't think my medication was helping much till I stopped it for a few days and thought better of it. Shouldn't yo yo between taking medication or alcohol but do have occasional alcohol - once in blue moon for special occasions. best one I'm on is the vitamin D but you have to start on huge dose if you are low to kickstart the system and that did make a smidgen of a difference.

sannyboyle profile image
sannyboyle

Happy Easter and congratulations on turning 25! It’s a rubbish life when you’re judging how to manage your day with pain killers, but not alone and you’re in my thoughts. I’m 57 and struggling. I’m sick of the side affects and how meds make me feel. I recently tried cannabis oil and cut out the gabapentin and paracetamol. 3 months and I had to stop. Now I’m slowly reducing my SRI’s so I can try 5HTP. Someone makes me nice brownies and a little piece helps me manage the pain so I get a better sleep. I don’t know if you’ve been to a pain clinic, but they can give you advice on how to utilise your energy. Hope something helps. Good luck xxx

aud01 profile image
aud01

I went out a week past Friday ... had about 9-10 vodkas ..... and went to a disco after it .. hadn't taken anti depressants or pain killers and even though I still didn't take any the day after but waited til

The Sunday before I took any meds at all. I can say now that was 10 days ago and I am only today having a day with less pain .... my stomachs has been agony . Anything I eat or drink including just water was going me excruciating pains in my stomache .... it was horrid ..... so I've told everyone I'm not even having one glass of anything ever again that's me tee total for life... I can't risk

That pain again xx

tinyblonde profile image
tinyblonde in reply to aud01

Ouch!! I used to be so chuffed that I always escaped hangover free but boy did I pay for skipping a dose of meds. Glad you’ve finally had a day with less pain! X

Sarahvit profile image
Sarahvit

Boy my heart goes out to you at your age, 25 that is too young to be dealing with this monster fibromyalgia. But yes I did a similar thing except mine was for a week. I had to be off almost all my meds except for thyroid med. It was against my doctor’s advice but was for a twin study out in Seattle WA on fibromyalgia and CFS/ME. I was sick as a dog and by the end of the week I was sent to the ER. They didn’t keep me so was sent back to the sleep lab and went back home the next day and took all my meds to feel somewhat better. So yes I know the feeling.

tinyblonde profile image
tinyblonde in reply to Sarahvit

Blimey, well done for keeping at it for a whole whole week!

Sarahvit profile image
Sarahvit in reply to tinyblonde

I really had no choice. I wanted to take part in the research study on fibromyalgia and CFS/ME. You had to go off all meds with a few exceptions like thyroid and heart medications. Come to think about it it was longer because it had to be all out your system considering the half life of each medication and some I had to wean off it so I was in frequent conversation with Fred the local Pharmacist I had at the time. It was rough the second time years later they weren’t as strick on going off all our meds.

tinyblonde profile image
tinyblonde in reply to Sarahvit

Ironically heart medication is the main med group I can't take despite having been born with a heart condition & somehow developing 3 extras! That's so impressive, I think by day 4 I'd be shouting at everyone! Well done and thats super awesome that you took part in that study.

Sarahvit profile image
Sarahvit in reply to tinyblonde

Thank you 🙏 I was hoping that the study would have led to a cure but it didn’t just to some article in a medical journal. My luck doesn’t seem to run in my favor. It it did I would have found a cure. The body balancer would be in every spa and wholistic practioner’s office and maybe in some chiropractor’s offices. I would be finaciallly stable and I would be heading up a cruise especially for people with fibromyalgia and CFS/ME going to the Bahamas or someplace warm. But it didn’t work out in my favor. 🤷🏼‍♀️

Nipper11 profile image
Nipper11

Well done for having a go at this big challenge. At the later part of last year I decided to lower my medication to the minimum amount it took me some time to restructure my movements .my body. Activity and rest patterns. I had to stay focused and listen to my body adapting to the lower medication. there would be days when I couldn't stand the pain and would increase my pain killers. I made sure my vitamins and diet were good and healed myself with lots of hot baths. The impact was my mobility slowed right down things became harder and my body would be screening at me. I was surprised at my mental state of being slower at everything I was doing .but one day I woke up and felt better in myself but with pain. I had stop tramadol and was surviving on a reduced dose of Naproxen .plus paracetamol and codeine. I did go through the wars with this experience . I am currantly still at a the lower level of drugs. However I am sure this will increase when I have a flare up. It did make me feel a little more in control of me . An interesting experiment if you can put up with the pain. I also used a Ten Machine to support me. Not sure my story will help you but wanted you to know your not alone.

You have to expect ups and downs with fibromyalgia. But I always willing to kick back at it when I can. Big hug .

Plan your challenge what can support you when you do this experiment again good luck .

tinyblonde profile image
tinyblonde in reply to Nipper11

I wish I could adjust to lower but it’s never worked for me, I do feel somewhat in control most of the time but sometimes I resent having to have that control :( Hope you can keep up with those lower doses and your flare ups don’t set you back!

Nipper11 profile image
Nipper11 in reply to tinyblonde

Oh I sure they will at some point. But I just keep at it until I get some sort of results as some of my tables have so many side affects. Do what you can when you can. There's always hope.

tinyblonde profile image
tinyblonde

I have noticed that since October my alcohol tolerance has gone down the drain - probably from increased meds and weakened body over the summer. I hope I still have my ability to at least have a beer or some wine every once in a while :(

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