New here & needing some advise

[Zhren]

Hi all,

I am new here and i need some advise. Sorry for the long post below.

So i have been diagnosed with Fibromyalgia since about May/June this year (not exactly sure when it was) by a rheumatology consultant (could not wait for the 46 week referral time on the NHS). My doctors have not put it on my records as yet (do not know the reason) until i have an MSK meeting at the GP's (some kind of physio i think).

I have kinda had my head in the sand over this since then, hoping it will go away. I have seen some changes in myself that i know that i have to face it now but i do not know how to or where to start. not only to help me but as you will read my family.

I am on 40mg of Amitriptytline and told to take paracetamol & Ibuprofen to also manage the pain, which is in my hands, elbows running up to my shoulders, across the back of my shoulders, lower back, legs and my knees. The amount of pain varies and not all the time in places like my knees but hands and arms are always in pain. My right hand is always swollen and the more i do (housework, anything physical etc) the worse that gets in being swollen and the pain, along with the rest of my body.

I have a 2 yo and a 6 yo and my partner who is supporting me but putting a lot of stress on her. I can rarely go out on family trips etc. If i do go, i can only manage about 2 hours before i am completely done in and need to come home to have a nap. I require a nap every day otherwise i am not able to support my other half with the kids bedtime and then spending time with my partner in the evenings.

I feel like i am missing out on my children's childhood and time with us all as a family. Even my 2 yo has started asking why i am not going on the family outings and its killing me.

I cut the grass the other week and i was struggling to walk for 3 days after due to the pain. In context, i completely removed all the grass and laid new grass back end of last summer all by hand/wheel barrow, this was not an issue for me to do moving 3-4 tonnes of top soil/grass by myself (with a little "help" from my 6 yo ).

In the morning it takes me 20 minutes just to get everything working (from being locked, like my right hand fingers, i have to force them open and shut multiple times to release them) stretches for my shoulders and back in bed before i can get up.

I have read that losing weight and having a very healthy diet will help so me and my partner are going to do this together but is there anything that anyone has experienced about the sleeping during the day and getting drained from walking around shops etc that has helped them.

I am fully aware that there may not be a quick solution to any of this but at this point i would welcome any thoughts/tips as things are not getting better. I feel like i do not control this yet and it is full controlling my life. I have also noticed that i am reacting very different to certain situations, things that i would have brushed off and not bothered me, now are. Absolutely nothing bad has happened from this but i have noticed it and i do not want to even step down that road(not even a little). I am not sure if this a reaction for the way this is controlling my life and cause i feel like i am not in control of my body.

I don't really know what i can do/start to get control of this but i know i need help/suggestions on what i can do.

Thank you in advance for any advise you may have.

 

[sunkacola]

I have kinda had my head in the sand over this since then, hoping it will go away. I have seen some changes in myself that i know that i have to face it now but i do not know how to or where to start. not only to help me but as you will read my family.

Hi/ @Zhren , and a warm welcome to you. I hope this forum can be helpful to you because that it our purpose.

Facing the fact of fibromyalgia, for those of us who have it, is one of the very first things and most important things we have to do, and at first it's not easy.
But as will everything else, failing to face the fact of what is in this moment makes us incapable of understanding it, dealing effectively with it, or helping ourselves or others in the face of it. Denial never helped anyone. Facing things head-on is required.

I hope you are not taking a high dose of the paracetamol or ibuprofen every day, as both are dangerous to your liver and kidneys and can cause failure in those organs if taken frequently.

I feel like i am missing out on my children's childhood and time with us all as a family. Even my 2 yo has started asking why i am not going on the family outings and its killing me.

Feeling as if one is missing out is common and fully understandable! It especially stinks when you have children. May I suggest that you think it through with your partner and come up with things you all can do together that won't take too much of a toll on you? You could have a special movie night at home, or a game night, or a weekend spent doing arts and crafts or special projects with the kids. Maybe this would help. In my experience ( which is admittedly severely limited), children care less what or where you do things with them than that you just do stuff with them. Read to them every night at bedtime, and they will never forget that. That kind of thing can be managed without costing you too much and will help you and them not to feel you are missing out.

I cut the grass the other week

Too much.
Part of learning to live with this is to know our boundaries and limitations. If I were going to cut the grass, I would divide the lawn into at least 4 parts, depending on the size of it, and do one part a day. Quit while you still feel you could do a lot more. Making sure you don't overdo anything is vital. Even if it seems silly to stop after only doing this little thing, whatever it is, that is what you need to do in order to take care of yourself and still get the job done. I break everything down into increments. I ask my body what it can do today, and only do that much or less. there's always tomorrow and most things don't all have to get done in one day. We just think they do because we've always done it that way.

I am fully aware that there may not be a quick solution to any of this but at this point i would welcome any thoughts/tips as things are not getting better. I feel like i do not control this yet and it is full controlling my life. I have also noticed that i am reacting very different to certain situations, things that i would have brushed off and not bothered me, now are. Absolutely nothing bad has happened from this but i have noticed it and i do not want to even step down that road(not even a little). I am not sure if this a reaction for the way this is controlling my life and cause i feel like i am not in control of my body.

I don't really know what i can do/start to get control of this but i know i need help/suggestions on what i can do.

Thank you in advance for any advise you may have.

There is indeed no quick solution. I have written a post of tips on how to manage fibromyalgia without drugs. Take a look and start experimenting to find out what works for you.

As for control: you say you don't control this yet. But you will never control this. It is always going to be something outside of your control. If you could control it, you could make it go away and that is not possible. There is very, very little in life that we really can control.

At the same time, you do not have to let it control your life. I have had fibro for years and it doesn't control my life. It limits what I can do. It means a lot of the time I am in pain. It means I cannot do what I used to be able to do, and sometimes I get depressed over that. But none of those things can control my life unless I allow them to, and I simply do not. I have to allow them to curtail what I do, sure, but my life is what I can make of it internally, and as long as I can find a place of true radical acceptance of this I can find peace of mind. And that is my life, not some disorder I have.

I grab every chance I get to love something, to be amazed, to feel happiness, to laugh. And I get as much out of those moments as I can. When I am depressed or lonely because I have no one to help me or support me in any way, I just say to myself, yes...this is what is happening now. And I go on with my day. I don't try to fight it nor do I wallow in it. It's just a feeling and in some other moment I will be able to feel something else.

The only way to empower yourself in this situation is with your mental attitude towards it, and the degree to which you can practice acceptance, rather than wanting control you won't get, is the degree to which you can have peace of mind and enjoy your life just as it is. Trust me on this ---- this is the voice of hard experience. It took me a bit of time. Doesn't happen overnight. But it's what I recommend.

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

 

[Zhren]

Hi, thank you so much for the response. There is a lot that i just need to accept and i thank you for your directness and honesty with what you have said.

With regards to to the other drugs for the pain, its only the over the counter levels. Nothing prescribed.

Thank you again and will sit down with the better half to read through the above.

 

[LOUD]

I feel for you. I am retired now so it is easier for me to deal with pain without drugs. But even so there are side effects. For example, I will go in my hot tub which I keep at 104 degrees. the temp and the water jets for 15 minutes greatly relieves the overall body pains, BUT, it also makes me sleepy. not enough to fall asleep just increases the fatigue. I end up vegging out in front of the tv for hours with no energy to do much but at least in less pain. My dogs love the company. I also take a OTC supplement called neuropaquell along with CBD gummies they make me feel stronger generally and relieve pain a bit. They help but my body builds up a tolerance so I go off them for 5-6 days then they help when I start again. I get the supplement via amazon, can't find it in stores. Aleve sometimes helps if the pain gets bad but I stay away from NSAIDS as much as I can. Tylenol does nothing for me. I wonder if the paracetamol which is Tylenol you take is a high dose?

 

[JayCS]

Brilliant advice already to so many things we can so relate too, here.
I'll concentrate on just one or three.

I feel like i am missing out on my children's childhood and time with us all as a family. Even my 2 yo has started asking why i am not going on the family outings and its killing me.

Yes, your 2 yo will of course be missing you there, but only cos it was/is 'normal'. But will also just want to try to understand. What's killing you I'd think is that it used to be normal and all the expectations which come with that. These are in the first place our own ones. So if we explain to ourselves ;P and then to our loved ones why this is, we can adjust the expectations to doing things that don't hurt too much.
The most important thing to me is turning time quantity into quality time. Instead of no contact at all or going far above my limits, I make sure when I see my kids and their kids I look into their eyes a lot, smile a lot, put my heart into it for that short time. I still 'play' with them on good days, but me being a crocodile is now even more 'just pretend' running and 'biting'. With minimal effort a maximum effect using lots of tricks and cheating and pretending. So successful that my kids kids invite other kids into it, which is even more effective and actually easier. Often I do it using a Hitchcock-like tension, i.e. no sound, hardly looking, and when someone approaches me I pretend I don't see it, and then lash out once, praps only once every 5 minutes.
Now even talking has got really difficult, I keep to 5 minutes at the moment, even with the kids, others not even that if I can help it. So when they phone and it's OK, I'll take it ... off the hook... ;P, and say: today we have 5 minutes, explain how I am in 1 minute and ask to the point how they are and what I or they want to know, and then I ask to phone again later, and decide then if it's possible or not.

is there anything that anyone has experienced about the sleeping during the day and getting drained from walking around shops etc that has helped them.

I get drained from everything, so I keep it short and simplified. Simplifying is something I try to do every day, with everything I do. I have 10 or max. 20 minutes in a shop, very occasionally two shops, whether "grocery" or clothes, everything else online. I used to simplify by chaining(?) tasks. Now I separate them, always back home first after each, unless praps 2x5' additionally. Nothing for and with other people, only what I necessarily need, everything longer online or with a very clear picture of what it is, where it is. I've ordered a standard shopping list on my phone in the most practical order of the shop and need 3 minutes for apples and veggies, 5 minutes for almond milk etc, get my bread/bun stuff when I don't have to wait at that counter. Generally I go to a shop and at a time when no one else is there (or I know the check out is efficient). That also means I don't have to mask, sometimes not even lock my bike, again saving effort.

In my first year of fibro I had to sleep during the day, and did so in bed for 1-2h. I'm not quite sure why I was able to stop, but I think it was finding the right combination of trigger-prevention, supps and sleep-hygiene to get restorative sleep at night. Now I've pretty much perfected that, so can get at least 7h of restorative sleep most nights. I try to get up early, like 6, and look to the sun as soon as she's up, and several times during the day, and minimize screen time in the evenings, aim for bed before 10 (at least it's now always before 11). But I take about 10 sleep supps too. And have brought my local pains etc. down to zero, so have my insomnia triggers under control. If I need longer than 10' to sleep after one of my 3-6 sleep breaks, I test whether I can keep my eyes open. If I can, I get up and do something until I'm really tired.

I am on 40mg of Amitriptytline

That's a lot, I'd say, not the normal fibro dose, closer to the antidepressant one.
The only thing it seemed to help me with was sleep, but it also zombified me all day along with altogether 8 side effects, and when I stopped I realized it was giving me artificial, non-restorative sleep. Since then I always prefer less sleep to zombified sleep, any supps that have zombified me were of no use, cos if I can't think, I can't self-care, hard enough even if I can think.... Anything zombifying me makes me lose even more control, like you put it.
One common side effect is weight, I put on 6kg (8%) and it took almost 2 years to lose it. So if you're trying to lose weight this will be much harder using it.... Some meds come without weight gain for some, but there's no guarantee. Much better safer without if in any way possible.

which is in my hands, elbows running up to my shoulders, across the back of my shoulders, lower back, legs and my knees.

To get local pains such as these down, I pinpointed, described, detailed, analyzed, looked for triggers and then for youtube exercises, acupressure, sometimes my massager on it, occasionally heat or cold and other physical things. Other things too, but these were and are the mainstay to getting them down to zero for me.