How do i do it on my own

hope23

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Ok so i am 6.5years in to my chronic illness/fibromyalgia/CFS Journey and for the most part i have had a partner throughout this time, who can help me get out of bed when my body says NO!!! or can rub magnesium cream on my back neck shoulders, SI joints. My partner and i have separated among the reasons being he cant deal with the high maintenance aspect of me being crook, we took some time apart in august 21 basically because of my health and he felt id stopped trying to get better(🤬🤬🤬🤬 but thats another story). He is a farmers son, typical kiwi harden up get over it you'll be fine type of guy which is fine theres plenty out there like that. We split again in april 22 for good, but have been living as flatmates due to housing crisis and no housing available etc. Today is a really bad day and so needed magnesium cream rubbed over back neck shoulders and my sacram joints which is my main problem areas when im not having a flare up. Long story short ive now found a place to move to and will be able to move within a month(ish) and its moments like this morning that make me go like how do i do this on my own.

I also know this all sounds super pathetic(so please be nice) like its just getting some cream put on ya back, but its like theres all those little and big things like that that feel impossible without help.
Im also not elegible for any government help as im not sick enough, or put different stubborn as hell and refuse to stop working cus actually a girls gotta eat and the sickness benefit is a joke.

How does everyone else deal with all these little things?
Amy suggestions and ideas ❤️❤️
 

cookiebaker

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hi hope23, and sorry about the situation with your partner. it sucks when they dont know how to be supportive.

there are places that make assistance tools for doing things like putting cream on your back.. might take a few tries to get the hang of it, but I bet you get it figured out quickly.
for getting out of bed.. again there are assistance tools you should look into - Bed rails and such.
the real trick will be finding affordable pieces.. but with some perseverance (and maybe a little creativity) i am sure you can find something that works for you.
 

hope23

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Hi CookieBaker, thank you for you kind words, from a mental wellness point of view i am really struggling, my current flare up started last week june(pictures of what start of my flare up looked like, ulcers are the worst!!!) and has just gradually gotten worse and worse at the moment. My standard(non flare up) meds cocktail consists of Amitriptiline(125mg), orphenadrine, celecoxib(200mg), and panadol, codeine and tramadol(pain management as we have never gotten me to a point where i have not needed any form of pain medication. That in itself has its own downsides(opiod induced hyperalgesia)) at the moment we have added diazepam(4mg, 3x p/day). Its just feeling at the moment like nothing is working 😭 20220623_125448.jpg
 

sunkacola

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Greetings, Hope23

I feel for you and the difficulties you are having. How to do it alone? Well, maybe I can help because I have had to deal with this alone all along because I have no partner.

First thing is you need to believe you can. So work on that. It's OK to vent and moan, but keep that to these forums where there's a perfect place to do it and get empathy. During your day, approach everything with the attitude that you can do this. And you can.

There may be, as cookiebaker said, things you can get that will help you with the cream application and getting out of bed. If not, then I suggest you learn to do it on your own, which I know sounds impossible but it really is not. If you start out very slowly and gently you can stretch your arms and become more flexible and apply it to your own back except for a few areas in the central part that most people cannot reach. the sacral part of your back is the easiest to reach. Try, and see what you can do.

I am wondering if your taking so many drugs, especially more than one opiate, is causing you more problems that it is helping. That is a very heavy load of drugs you are giving your system, and my suggestion is to do what you can to cut back on those or eliminate at least one of the opioid drugs.

And here is a post giving you all kinds of suggestions for how to take charge of your own health and feel better and more empowered. Of course everything doesn't work for everyone, but I know that there is at least one thing there that will help you if you try it. Learning how to manage things on your own is hard. Very hard. But if you work at it and learn, you will feel so much better about yourself and your situation.
Try things. And every success you have, however tiny, congratulate yourself.

You can do this.
 

cookiebaker

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Sunkacola is spot on with trying your best to stay positive. worrying and stressing just makes things worse.

a simple method i use to get out of bed is to kind of roll, swinging/sliding my feet over the edge, which helps with getting the rest of the body upright.
I dont try to stand right away, just give myself a moment to adjust to being vertical instead of horizontal.

I have been tried on multiple drugs for my neuropathy - gabapentin, nortriptyline, duloxotine, and others... none really did much for me - even when increasing dosage over time to the point that the side effects were not tolerable.

I currently take sertraline for anxiety, but i want off of it.. aside from some of the more common side effects i am losing my hair... :cry:
 

hope23

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Hi Sunkacola,
I am very proactive about my health and have tried multiple different diets suggested to help with FM and have tried these for 6 to 8 month stints, whilst this has helped me find trigger foods, which is very helpful, the rest has made no difference, i have also tried a number alternative therapies(again all for a minimum of 6 months). I excercise regularly(a little bit every single day, even during flare up(this can sometimes just be a 10minute stretch session) as i know that if i stop everything during flare up and then start wjen i get back to baseline that can cause another flare up all on its own), i avoid trigger foods. I will try stretching and hot or cold wheatpacks to try and bring my pain levels down before medication. My doctor and i are fully aware of how much medication i am on(as well as the risks of opioid induced hyperalgesia). Unfortunately for my fibromyalgia we have not found a medication combination that works long term, we will get it working for a short period of time and then we go back to square one. I 100% appreciate and take my hat off to those that can do this meds free and find that alternative therapies and diets and excercises help. Unfortunately that has not been my experience. I have lived the last 6.5years on pain scores between 6 and 8 depending on the day.
When i get back to baseline i can usually get down to only needing two lots of pain meds during the day(not always requiring tramadol). I am painfully aware of the risks, side effects and downsides of all these medications however after trying quite literally everything available to me here in new zealand(diet, supplements, alternative therapies, differentforms of excercise), i end up back where i started with finding the right medications for my FM.
To be blunt, if i want to be able to function as a human and eat and have a roof over my head then medications are the options i have available to me right now. That may change as new research comes out and i also have a doctor who is always looking for new treatments and information, which is why i now do monthly b12 injections.
There are 100% ways i can do 99% of things i need to do, and if it means quite literally rolling out of bed and crawling to the shower thats just how it is for that day and thats ok.

Cookiebaker, its not very often i have myself a small pity party, i count myself lucky most days that it could be a hell of a lot worse, and there are thousands out there far sicker than i am, i have a sister with multiple sclerosis.
In terms of medication ive tried pretty mucj everything available to me here in NZ and amitriptiline, orphenadrine(anti seizure/muscle relaxant), and celecoxib have been the only ones that have made any kind of difference.
I have also been extremely lucky in terms of side effects and the only ones ive really experienced across all that ive tried is dry mouth(read:desert mouth), and weight gain.
 

hope23

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I also wanted to add, i am a 28F, i have tried to come off medication as at the time i had hoped to become pregnant. We tried for 18 months to come off medication. We did this gradually not cold turkey. The end result was my being unable to function at all, my pain levels were so high that i mentally could not focus on anything else. When this focus became an issue i tried a number of different things to distract myself to no avail.
I 100%appreciate and am aware that medication has huge downsides but for me after trying pretty well everything available here to me in NZ, i am left with medication being my option at the moment.
 

cookiebaker

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Cookiebaker, its not very often i have myself a small pity party,
nothing wrong with that once in a while.

I also wanted to add, i am a 28F, i have tried to come off medication as at the time i had hoped to become pregnant
Why on earth would you want to add even more stress to your body with everything else you are already dealing with?
Being pregnant is hard on the body, and giving birth is even harder. Granted, both are "temporary", but a baby is also a lot of work and can not be a part time thing. It is 24 hrs/day, 7 days/wk, for years. Baby still has to be bathed, changed & fed, even when you are in a nasty flare up. There are no real breaks from being a parent. Even when they are grown and have lives of their own.

I get the idea of wanting to have a baby of your own, but with your health being what it is, that may not be a good idea - for you or a baby.
I had my kids long before fibro came into my life, so thankfully i did not have to deal with both things at once (my kids are in their 30s now). There is no way i would want to try having a baby with fibro, and the other problems i am currently coping with. I have a hard enough time standing long enough to do the dishes or lifting a partially filled laundry basket, let alone trying to take care of a baby.

Please dont get me wrong, i am not trying to be mean, or bashing on you. Just trying to point out the realities of having a baby in your life.
 

hope23

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Hi CookieBaker, this was a conscious and planned decision, that was only going to happen a. If i could get meds free and b. Fully dependent on the condition i was in should i get to that point. The only reason it was mentioned is purely for the fact that i have tried to do the meds free thing and it went extremely poorly this was an 18month battle
At the end of the day the decision was made that pregnancy/baby was not an option for me.
I have for the most part accepted that it is unlikely i will have children. Not being able to have a family of my own has been a hard pill to swallow.

This attempt was about two years ago, i really only mentioned it in response to Sunkacola's comments regarding medication, the fact of the matter is that i have tried to get off medication, however my FM wasnt having a bar of it. I fully appreciate those that can manage their FM meds free, but that has not been my journey or experience.
 

sunkacola

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Hope23, I am sorry that it has been so hard for you and you have in addition had to deal with the frustration and disappointment when you try things and they don't work out for you. The fact that you have kept trying is a big thing and you deserve a lot of respect for that.

My question for you now is, what can we on this forum do to help you? Whatever we can do, we will try. If you have any questions about anything, please ask and if we can answer we will. If you want support, please know that we are here to give it, without judgements or trying to tell you what to do. If you just want to vent, we can be here for that. Just let us know what we can do to help you.

Another possibility for putting the cream on your back: On line you can buy a sunscreen applicator for your back. You just put the cream on it and can reach those places on your back. Amazon has them for under $10 USD. Just google "sunscreen applicator for back". They look pretty good to me.

Referring back to your first post, I have another idea. Find out if there is a chronic pain group that meets either in person or virtually in your area. If it is in person you might make a friend, or at least someone who could help you at times when you need it, and you can do the same for them. Might not be possible there, but worth a good look. Ask your doctor if they know of anything like that.

If there's nothing (and if you can manage the energy needed to do this) try starting your own. It could be very small at first, but you might find it is something several people near you need and will join in with you to make it happen.
If I have any more ideas I will let you know.
 

hope23

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Hi Sunkacola,
I think for the most part i cope pretty well, and maintain perspective that yes i am sick, yes sometimes(or lots of times) its shit, but that is ok too. I could be so much worse off and this is something i hold to every single day. Nothing good comes of dwelling and i know this and have accepted it.
I think my biggest thing i need is that when i do need to vent its to people who know what im going through and have experienced it themselves. I have a few close friends who are fantastic and i have shared a lot of my journey with then but have also shared the original spoon theory article. I have found for people who havent lived it they need something tangible to grasp in order to understand.
I definitely have days where i feel extremely disheartened and feel as though ive tried everything, im guna be this sick forever. Im lucky that those days are few and far between. I think having a sister with multiple sclerosis has kept me pretty grounded and aware of the fact i could be so much worse off and as much as fm is really shitty in terms of long term outlook or prognosis im lucky, because it could be so much worse.
I have been through a pain clinic here, however imo it was a joke, whilst the fact i met two people with chronic pain/illnesses which was really good, the course was very much learning about your pain and different types, things to try, which is great, but im extremely proactive about my own health and am always looking for new research and treatment options which made this course not of huge benefit for me but i did meet two people who 'get it'.
For me i think im constantly looking for new research(substantiated, and peer review(i.e. legit)). And need a place to vent when its one of those days.
On the lotion side of things a friend has give me her self tan applicator which is working a treat, and in terms of getting out of bed, if its a roll out onto the floor to crawl to shower then thats ok and hey i can still crawl so thats something 😊😊😊
Thank you guys for listening and actually responding, i have gone to a gew other forums and just get no response or some less than helpful judgement.
Love to all and hope you have plentynof spoons today xx
 

cookiebaker

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sounds like to me you have a pretty good handle on your body's needs and what is working for you.
and yeah, we ALL need a place to vent sometimes.. that is what this section of the forum is for.
i have shared a lot of my journey with then but have also shared the original spoon theory article. I have found for people who havent lived it they need something tangible to grasp in order to understand.
you might want to look up the cell phone battery analogy.. it is very relatable for just about anyone these days
 

Lou_81

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Hi Hope,

I'm a single parent living with cfs and fibromyalgia who is doing this alone. My daughter is almost 16 so is pretty self sufficient but I won't lie things can get tough. Some days (like today) I'm in so much pain and so exhausted I feel like just staying in bed but resist the urge as much as I can. I try and get on with it for my own sanity and to set a good example to my daughter too.

As others have said, there are tools and tricks to help you. Invest in (or try and obtain through your GP) a frame for helping you getting out of bed. If thats to daunting even a stool near your bed can help, and can double up as a perching stool for the kitchen. Applying creams can be done using a loofah type tool (but as others have said will take practise) Batch cooking is useful as you can freeze meals to save you cooking every day (and with the current fuel crisis is also economical). Don't clean or attempt to clean the house all in one go. A room a day works well for me, but I also rope my daughter in as a cheap(ish) cleaner for her pocket money! It also makes me feel as if I'm doing something every day that's productive and that's good for the soul.

Sleep is really important especially if you're working. Try not to look at screens for too long or before bed and get and such sleep as you can.

Have you thought about having an allergy test too? I had one a couple of years ago and discovered I was lactose intolerant as well as being allergic to a few things so cutting out dairy has really helped. The odd time I do slip up and eat something I shouldn't I can really tell the difference the next day.

Like I said it's not always easy, and there will be bad days but keep talking and reading up to get advice, there is tonnes of it out there. If I were you I would apply for PIP. I was hesitant too but glad I did so as the money comes in handy, especially for a one income household. Iys not as daunting as you think and there are lots of organisations on platforms such as Facebook that can help with the forms etc.

Wishing you all the best anyway, you can do this. We are stronger than we think x
 

JayCS

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What I'm thinking is that the main issue has been missed so far...: having to work.
You've tried so much and nothing's able to prevent the pain from overdoing it coming up, because it can't. There won't be any meds for that inside the next 10-20 years, research has a long way to go, as you know.
The only way for anyone to get pain from overdoing it down is to do less.
So for me the question appears to me how you can adapt your work or swap it. To help there we'd need to know roughly what is involved mentally, physically, hours, co-operation of colleagues and bosses, possibilities to apply for supplementing disability pay or reduction of hours...

Trying to put myself in your place by comparing with mine (in italics):
Your pain is 6-8 most days and it seems without meds a little more? (Or how do you mean "don't help"?)
I guess my scale's different: For me that'd mean my colleagues and my wife would send for an ambulance, because it'd mean I'd be crying and moaning all day (and I'm a tough guy).
I work 10h/w online, and could do 20-25h/w if necessary / possible without stress without overdoing it. However I'd then have less time for self-care and research. Before getting jab-triggered MCAS I was able to go to work for 1-3h/d, under certain conditions, plus about 5h/w online, pain of 3-5. 1-3h of rest after, pain of 2(-3). When I tried to go to work more, even online with stress more, my pain went up more and more to 5-6(-7), resting to get it down no longer helped, which meant worse insomnia, nothing helping, most (amitripytline, melatonin, CBD and supps) zombifying me, so absolutely impossible to work with no brain.
So readjusting my scale again, to "just about able to work without more insomnia and crashing". The result would mean I wouldn't be able to do anything other than work. I would have no life: I'd like you lose my partner (not now, but in your position), have no hobbies that involved moving, couldn't socialize at all, nothing I could spend my money on apart from rent, food and getting to work. I would ask myself: Is this worth it? As it is, all of that is minimized, but I can be mentally active all the time while resting (incl. stretching etc.)

Bottom line: For me it's important to make sure I have the right work-life-balance. Whenever that's unclear to me I talk with my psychologist about it. It'll have been different in your relationship, but I'd rather sleep on the streets than lose my wife. Less dramatic: I'd rather have "no" money than be unable to play half an hour of table tennis a day.

Next: What progression can you expect? Many med, esp. these, esp. pain killers, only suppress, they don't heal, so while I continue overdoing it, I'm exploiting my body. Which is what I actually did (not even needing meds) before my full flare crash, which brought me from 50h/w down to 0 for 10 months.
Fibro does not progress, but if we don't stop overdoing it, the symptoms will likely get worse and worse.

I'm not saying that'll happen to everyone / you, cos everyone's different.
But what are the chances, what risks are we taking when we overdo it, are they worth it and sensible?

Instead, my decision was to do what's best for my body, so work at self-caring, treatments and research. I think that's the only chance to get a better handle on it - getting out of the vicious circle, coming to rest, learning the sweet spots and limits, then building up more treatments to slowly get up again in a healthy way and maybe even reach much of the previous way of life without meds....

So trying to transfer your symptoms and their progression to your situation:
Considering how unlikely it is that your pain will get better, how likely that it could get worse:
Is this the best work-life-balance you could wish for?

Meds: Alternatives apart how might you try to adapt the meds?
I'm unsure how much exactly they're helping you.
On the one hand 'not much' and 'short term', 'back to square one'.
On the other when you them all, it was worse.
So first, how much less pain reduction do you actually get by the meds?
If your pain now is 6-8, does that mean with meds it's +1 or +2?

Comparison:
Apparently they'll helping you more than they did me: They don't help my fibro pain but increase other pains like skin and gut. If I were pressured to work and meds would decrease the pain a little, I would still crash big time, like I did.


Now if you add or increase a med and it helps short-term, but then stops helping:
What happens then: do you continue with it, or do you stop it because it stops helping?
If you need to continue taking it, because otherwise the pain will get worse again, it sounds like a spiral.

A possibility you may need to take into account is that a pain mechanism in your body may be causing this and will never let it end, it will always win. Our pain is notorious for being resistant to pain. Surprising that meds help you at all...
The only way out of that would be to stop working, wean off of all of them, and learn new pain strategies which may include maybe the same treatments that don't work when you're overdoing it and on meds, or try some new ones that your body doesn't know yet. That way your body might be able to work up positively and constructively into a different channel using all the energy you've been putting into work, rest and pain etc.

Regarding your previous med strategy of adding and adding, my idea would be to try slowly weaning off the one you feel is helping least and seeing how far you can go without symptoms getting worse. Is that a new possibility or did you try it like that?

BTW: With amitriptyline I'm surprised you're taking as much as 125mg. For fibro the normal amount is 10mg or 25mg, at most 50mg. Anything above would normally mean for severe depression. I do know people who take more, and it does seem to help a few, but I'm wondering what would happen if you tried weaning down that one?
 
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