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[PFG37]

Hi I’m a 37 yr old woman and a mother of 2, I was diagnosed with Fibromyalgia in 2018 after a battery of tests and confused GPs. I am UK born and bred. Please can people spam me with medications and treatments that you find have helped and why. So I can list and discuss with my GP. I have reached my kick scream and lay on the floor point. I have thrown my proverbial toys from the pram, which has led to me ceasing all my medication which was 60mg of Duloxetine and 150mg Amitriptyline, as they had literally no effect on my pain and my brain was like scrambled eggs all day. I do understand the sudden effects of ceasing a medication can be detrimental and I do have friends and family around me to ensure that if I don’t notice/identify a problem they can and will intervene on my behalf. I need to know what other people are taking and find helpful so I am armed with information to help me live along side my Fibromyalgia and not just survive with it. I am willing to try holistic treatments and pharmaceutical treatments to mental health techniques and exercises I want to rule nothing out and use as much as I can to create a care plan that works for me, my body/mind and my family so no answer or suggestions will be discarded or ridiculed out hand. I am on a weight loss journey and I’m awaiting a re-referral back to the pain clinic also. Please help me on this path of discovery to find the new me as I have just come to realise the old me will not make it out of this alive so I need to reinvent myself so I can flourish in this quagmire of confusion and ignorance that is usually the path that I have to pick through.

 

[sunkacola]

Hi PFG, and welcome to the forum.

Unfortunately, the definitive answers you are seeking cannot be had so easily. The fact is, there is no medication that helps everyone who has fibromyalgia, or that even helps most of us. In fact, the vast majority of us find that there is no medication that eases the pain significantly, or at the least that does so without also having side effects that are intolerable, and/or being addictive, which of course is to be strictly avoided as it will only cause you far more problems. Everyone's experience of what helps is so individual that the only way to find out what will help you is to go on a very methodical journey of experimentation and discovery for yourself.

Even if other people tell you that this or that medication helps them, it doesn't mean it will help you. Even if other people tell you that this or that diet or other thing helps them, it doesn't mean it will help you. No doctor can tell you what will help. You have to discover this for yourself.
This may sound daunting......it seemed that way to me at first.....but when you start learning what your body needs and being able to do that for yourself it is very empowering, and that in itself is very helpful because it takes away the feelings of being at the mercy of this syndrome that no one understands.

I have written a post about this, and I urge you to read it and start that process immediately. Remember that doing a bunch of things all at once will not allow you to discover which thing helps, if anything does. You have to have patience and be methodical - try one thing at a time, and give it a good long try, not just a diet change and if it doesn't help in a week give up. This process takes time, but it is very much worth it if you can find things that will help you.

We are here to help, to answer any questions you have, and to support you in this process.
Start here:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[PFG37]

Thank you for you input and advice. I totally agree and understand that I may respond in a different way to another person with any method of treatment I’m asking for the suggestions so that a can explore and develop what works for me but I’m not sure where to start with it all hence the post a the question. As you can see I have been on this journey for 5 years and have been on various medications for significant times on each variation, so I’m aware and understand the need to give things a fair trial. Whilst I will happily read through your information and take all the relevant points on board, I just wondered what treatments methods other have tried so that I may see if that is something I have not yet tried. I am also fully aware that they may not work. It’s better to have asked and tried that to sit in pain because the doctor couldn’t help me. Doctors will only prescribe medication that might have other side affects. A holistic approach that may not work but take the edge off sometimes, is better than nothing. I’m great full for the input from ANY member of this group where they found something that helped them.

 

[sunkacola]

It’s better to have asked and tried that to sit in pain because the doctor couldn’t help me. Doctors will only prescribe medication that might have other side affects. A holistic approach that may not work but take the edge off sometimes, is better than nothing. I’m great full for the input from ANY member of this group where they found something that helped them.

Just because doctors cannot help doesn't mean you need to sit and be in pain, and that is exactly what my post is all about.

When you say "a holistic approach may not work", I assume you mean that it may not completely remove the pain. But nothing is likely to do that, so basing your opinion on whether something works or not on whether or not it completely removes pain is unfortunate. Holistic approaches, when you have done the work to find out what combination of things work best for your specific body, will work. They will make you feel better, and will empower you as well. I have personally used the methods I outline in the post I linked for you, and have found that it helped me a great deal, so there is input for you from a member of the group where they found something that helped them.

I can be very specific about what I do and don't do that helps me, and so can others. But the bottom line is you have to find out for yourself.
So, to be specific:

Here's what I take:
I take L-Carnitine and D-Ribose every day, because they help my body to assimilate what I eat and that really helps my energy level. (This won't be appropriate for everyone).
I have some Tramadol left over from when I used to take that, and if the pain gets too outrageous I let myself take one. This happens maybe 4 times a year or so, and I won't let myself take more than that.
I use medical cannabis and CBD in combination pretty regularly, especially at night to help me relax and sleep.
I also occasionally will take an Advil alongside a muscle relaxer when I have certain kinds of back pain. Maybe 6 -8 times a year.
I use a TENS machine sometimes, especially for leg pain.

Here's what I do:
#1: **I practice radical acceptance.**
and...
I eat a healthy diet all of the time, and I mean all the time. I make an exception and eat something not-so-healthy maybe 3 times a year at most.
I listen carefully every day to my body and believe what it tells me. I don't say "oh, I can keep going a little longer" when my body says to stop. I stop. I do the very best I can every day to get things accomplished that need to be done so that I have that sense of accomplishment that I strongly believe everyone needs. I take breaks while doing these things, and if I can't get them all done i don't let it bother me. If I really can't get anything done one day I don't let that bother me either because I know there will be a better day.
I don't guilt myself.
I don't allow anyone else to guilt me either.
I have removed all toxic relationships and persons from my life.
I do my best to get enough sleep every night.
I get some exercise every single day. At the least, I take my dogs for a walk. At the most, I do a couple of hours of yard work or other activity on top of the walk or take a really long walk, maybe a couple of hours and several miles long.
I remember to be happy for what I do have rather than allowing myself to wallow in grief for what I have lost. But if I need a day just to feel that grief then I let myself have that. And then I get back up the next day and put that aside and focus on playing with my dogs.
I keep my house tidy and clean, and I've gotten rid of excess baggage and I don't sign up to do things I am not certain I can do.
I do my best to keep a positive attitude and forgive myself for having a day now and then when I cannot be positive.

 

[BlueBells]

I don't guilt myself.
I don't allow anyone else to guilt me either.

Hi @sunkacola

Those are two of the hardest things I have/am battling with. Sometimes I've found myself in a situation where I need to do something and the urgency forces me to push through the fibro and I haven't the head-space to wallow in guilting, and at the end, I feel better for it

I'll expand on the other thread later.

Hi @Sim80

@sunkacola Oh, 'edit" thanks so much for that post, I think many of us will feel optimism to try some new ideas

 

[JayCS]

Hiya PFG,
sounds like you're in a great place and ready to really make a difference on your journey.
The question "what do you do that helps?" is always a challenge for me to answer, cos there are many 100s of treatments to try out (my "fairly complete list" would break the mould), and I use probably "100+" every day, many of which I don't think about any more. Also because many of us have 50+ symptoms, but all of us are different.
So one starting point would be your specific symptoms, detailed, tracked, prioritized, which you haven't mentioned yet. For me it's not "fibro" I treat, it's each symptom singly. Finding connections between them has only been a help in certain areas like neurotransmitters, local pains, GI triggers. If you're up to lots of details on various ways to go about identifying symptoms, triggers and choosing treatments, I did a thread on that here.

1. Mental: My "attitude" part is very similar to sunkacola's, also your therapy types - I use talk therapy if necessary, ACT / radical acceptance. Various relaxation techniques, most effectively Wim Hof breath holding (a challenge for some), Non Sleep Deep Rest / Yoga Nidra (also helps sleep).
2. Physical: For local pains, some of the manual techniques that have helped were osteopathy and acupressure, but now I've realized I'm better on my own using a great variety of stretches, acupressure and a massager, with youtube physios for ideas for anything new.
3. Diet apart from extremely healthy is a matter of eliminating trigger foods which vary greatly, but that way I've got my GI issues under control better than ever before in my life, whilst nothing made a difference to anything else.
4. Environmental triggers like weather, light, sounds are things we can learn to adapt and adjust to.
5. No meds for me as they harm, don't help and I prefer pain with brain to no pain with no brain. My tally of now ~40 effective supps (incl. L-carnitine, but not D-ribose) have come about more for my MCAS, inflammation, but bladder pain and sleep are definitely part of fibro and I have those well under control. But I don't know how much they're helping having got my local pains down to zero. They're not helping my Ache/fatigue when I am active.

That would be sorted by treatment type.

Sorted by the most common symptom areas according to the ACR criteria:

1. Pain(s): Local pains (often "tendonitis") well under control with manual techniques: stretches, acupressure, massager etc. The "overdoing Ache" I only have under control by adapting & adjusting hour to hour, work in progress.
2. Fatigue: Being outdoors all day and looking to earliest sun helps more than the 20+ supps, work in progress.
3. Insomnia I've "solved" via minimizing 30+ triggers, 10+ supps, looking to earliest sun, all screens off from 8pm to 6am.
4. Fog I don't have too much , supps may be helping a bit.
5. Headache: cold showering, breath-holding/breathing/air etc.
6. GI: elimination of triggers, so only 50 foods for me.
7. Depressiveness: radical acceptance, happiness diary...

 

[PFG37]

Thank you for all of the input sent my way. So here’s what I’ve gathered so far and started to piece together a care plan for myself. These points below have been in place since the 7/9/23 so still early doors yet.

•I am starting a supplement & CBD program to try and help my body recover and get what it needs on a daily basis. All supplements have been passed by my GP and been met with enthusiasm. All of which I’ve chosen to target a symptom rather than Fibro as a whole. I have also put prescription medication on hold for now as I hate the fog/fuzzy drugged feeling I was getting from the tablets.

•I am slowly becoming more aware of my Stop signals and I’m trying to listen more to my body when it needs to rest. Equally I am starting on a walking program to try and exercise within my ability and strength. Will increase accordingly as I get stronger/build stamina.

•Learning to say no when something/someone says I have to do something without being guilted or brow beaten.

• Taking steps to cut out processed foods and sugars and identifying trigger foods so that I can cut them out of my food intakes. I have also set up a water quota for each day and cut most of my caffeine consumption out to help my health too.

•Finding hobbies and mindful activities to enjoy when I’m just not able to do physical activities as much or for as long.

•Enforcing a routine that will be sustainable even on a rough day.

These are my 1st baby steps to try and live with this condition. Hopefully I will be able to get some relief this way and work on adding more to this routine to make things better for myself and my family going forward

 

[sunkacola]

Bravo, @PFG37. It sounds as though you have set yourself of a very positive track, and I wish you all the best with it.
Remember to be gentle with yourself if you don't meet your standards on any given day or even week. Think of treating yourself like a kid or a puppy, who has to learn a new way of being and new rules. Praise the good, and be kind in correcting the mistakes.

There's one thing I'd add (if you want to), because this has helped me a lot. Grab every opportunity to laugh and laugh hard. Grab every opportunity to feel joy and feel it thoroughly. It can be the smallest thing. A beautiful bird, the sunset, a funny thing someone says or does or that you see on the internet. All those tiny moments of joy can add up and will help.

Please keep us informed about how this goes for you so that we can be here to support you.

 

[PFG37]

Thank you, and yes I agree grab every positive thing from a moment that we can so that when the storm hits we have light love and hope to look back on x

 

[vanna1211]

My 84 year old grandmother has been taking cymbalta for 2 days and she just got off of the amitriptyline but it was only 25 mg she took it for too much now she's took cymbalta for 2 days and it's not doing her right and I was wondering if anybody knew if she could switch right now from the cymbalta that she took the last 2 days stop it and take Zoloft and start taking Zoloft

 

[sunkacola]

My 84 year old grandmother has been taking cymbalta for 2 days and she just got off of the amitriptyline but it was only 25 mg she took it for too much now she's took cymbalta for 2 days and it's not doing her right and I was wondering if anybody knew if she could switch right now from the cymbalta that she took the last 2 days stop it and take Zoloft and start taking Zoloft

Hi Vanna, None of us here are doctors, and even if we were we could not legally or appropriately advise you on something like this.

Please call your grandmother's doctor for the answers to these questions. It is unsafe for you to make these decisions without proper medical advice from someone who knows her history and medical status. Sorry we cannot help with this, but you need the professionals.