Fibromyalgia and Work & more

[Katie0133]

Hi all,

I’m new to this forum, I felt like I needed to reach out to like minded people for advice and to talk to people who understand.

I’m currently in work full time but dropping down to three days after one more week. My boss asked me to continue for two more weeks because staffing was so short, me being me so ‘ok!’ Even though it feels like it’s killing a bit of me each week that goes by. I can’t say no, they know that.
I really would love to give up work completely, I know it would relieve so many of symptoms as I could rest when needed but I don’t want to re reliant on my husband. I don’t want to give in on a job I tried so hard for.
Does anyone else feel like this. Fighting for my last bit of normal.
I’ve been told by my OT to apply for pip so it helps towards the money I’m losing by going let time but I can’t help but feel like it’s another battle that I can’t win, like they believe me because I work.
I get so fatigued that practically any time I’m not at work im sleeping. My poor husband didn’t sign up for a wife that’s moaning and sleeping still the time.
How do you guys cope with this?
Also are you on medications that work? I’ve recently been prescribed gabapentin but it’s making my fatigue so much worse.

 

[JayCS]

I’m currently in work full time but dropping down to three days after one more week. My boss asked me to continue for two more weeks because staffing was so short, me being me so ‘ok!’ Even though it feels like it’s killing a bit of me each week that goes by. I can’t say no, they know that.
I really would love to give up work completely, I know it would relieve so many of symptoms as I could rest when needed but I don’t want to re reliant on my husband. I don’t want to give in on a job I tried so hard for.
Does anyone else feel like this. Fighting for my last bit of normal.
I’ve been told by my OT to apply for pip so it helps towards the money I’m losing by going let time but I can’t help but feel like it’s another battle that I can’t win, like they believe me because I work.
I get so fatigued that practically any time I’m not at work im sleeping. My poor husband didn’t sign up for a wife that’s moaning and sleeping still the time.
How do you guys cope with this?
Also are you on medications that work? I’ve recently been prescribed gabapentin but it’s making my fatigue so much worse.

Hi Katie, and welcome! 👋
I talked to my boss/es when best to start dropping out and try to get well again full time, so it was similar to your situation, just I well knew what'd be best to finish off before leaving, suspecting it'd take a while.
Yeah, it was killing me, but I'd made myself oblivious to that. Sometimes I wonder whether dropping out earlier would have saved me from some of the big crash and the full flare I've been in since then. But "woulda, coulda, shoulda" doesn't help.
Alternatives to being reliant on your husband and giving in on a job you tried so hard for might be dropping out for a time, getting better, and then looking for partly a way back, partly work workarounds (pardon the pun). That's the way I'm doing it, to delay having to stop completely. Before the arrangement I've now crafted ends in 1.5years I'm gonna think up a new one.
I no longer consider "fighting for my last bit of normal" to mean hanging on to something that "isn't working" (pun again), because that's sham normal, not real normal. Normal no longer to me means the way I used to live, or defining myself by how I perform, what I attain, it's the way I was supposed to live, meaning loving self-care, and thus having real time for myself, people, happiness, living intensely in the moment, rather than wasting away not able to do anything properly any more. (That said I have performed and attained more than enough in my life in all kinds of areas, so it is time to say goodbye anyway. But if I hadn't it would be too...)
I'd definitely apply for PIP, see what @Badger recently advised on the other thread, you can get it even whilst working, and the UK also has another benefit for people working I seem to remember.
So... do it for your husband. And look for alternatives at the same time so that you don't fully rely on him.
I didn't tolerate any of the 6-7 meds that were given to me, so: no.
If I were to try again, I'd switch them quick if they don't work, and even quicker if they harm.
If at all, I'd again start with amitriptyline, which I managed to stay on despite 8 side effects for 4 months - too long! Then try duloxetine/Cymbalta, then pregabalin/Lyrica rather than gabapentin/Neurontin. But reckon with none of them helping much and possibly harming a lot.
Instead I'd (= we here'd) recommend getting all your bloods checked intensely for vitamin (A, all 8 B, esp. B12, D and E) & mineral deficiencies (e.g. iron, copper, zinc, phosphate) as well as of course all possible markers, and supplement for these deficiencies, also identify and target your symptoms with all the 100s of mental, physical, dietary, trigger preventing and supps you can find here, praps starting with sleep....

 

[cookiebaker]

I’ve recently been prescribed gabapentin but it’s making my fatigue so much worse.

yup, I had a very similar experience with it... I took it at night, before bed to try to help me sleep better (didnt work great) and the continued fatigue during the day made me finally ask my doc to go off it.
Duloxetine/Cymbalta did basically nothing for me
Fluoxetine/Prozac (used off label for neuropathy) made me so exhausted I could barely stay awake during the day, even after sleeping all night (and still not feeling rested)
Nortriptyline/Pamelor (also used for neuropathy) gave me tremors
For me, meds dont seem to help much and/or have unwanted side effects. However, there are those that do reasonably well on certain medications.. It varies for everyone.

I would suggest telling your doctor that the gabapentin is making the fatigue worse and you would like to stop. If your doc is a decent sort that actually cares, they will listen to your concerns, and work with you to try to find something that works for you, or no meds at all, if that is the way you want to go. The choice should be up to you.

 

[Con]

Hi all,

I’m new to this forum, I felt like I needed to reach out to like minded people for advice and to talk to people who understand.

I’m currently in work full time but dropping down to three days after one more week. My boss asked me to continue for two more weeks because staffing was so short, me being me so ‘ok!’ Even though it feels like it’s killing a bit of me each week that goes by. I can’t say no, they know that.
I really would love to give up work completely, I know it would relieve so many of symptoms as I could rest when needed but I don’t want to re reliant on my husband. I don’t want to give in on a job I tried so hard for.
Does anyone else feel like this. Fighting for my last bit of normal.
I’ve been told by my OT to apply for pip so it helps towards the money I’m losing by going let time but I can’t help but feel like it’s another battle that I can’t win, like they believe me because I work.
I get so fatigued that practically any time I’m not at work im sleeping. My poor husband didn’t sign up for a wife that’s moaning and sleeping still the time.
How do you guys cope with this?
Also are you on medications that work? I’ve recently been prescribed gabapentin but it’s making my fatigue so much worse.

Hi Katie - welcome. How is your actual sleep? We are constant aware while sleeping with fibro…be sure to set up a nighttime routine. Gabapentin helped at first with my diagnosis but have cut it in half and added low dose naltrexone and I also take small dose duloxetine. I also take supplements and not yet a year on a cpap machine for hypopnea. Have your thyroid checked if havent already. Be kind to yourself. I work full time and have figured out pacing but obviously am way from perfect. One day at a time. You got this. Everyone is different.

 

[Katie0133]

Hi Katie, and welcome! 👋
I talked to my boss/es when best to start dropping out and try to get well again full time, so it was similar to your situation, just I well knew what'd be best to finish off before leaving, suspecting it'd take a while.
Yeah, it was killing me, but I'd made myself oblivious to that. Sometimes I wonder whether dropping out earlier would have saved me from some of the big crash and the full flare I've been in since then. But "woulda, coulda, shoulda" doesn't help.
Alternatives to being reliant on your husband and giving in on a job you tried so hard for might be dropping out for a time, getting better, and then looking for partly a way back, partly work workarounds (pardon the pun). That's the way I'm doing it, to delay having to stop completely. Before the arrangement I've now crafted ends in 1.5years I'm gonna think up a new one.
I no longer consider "fighting for my last bit of normal" to mean hanging on to something that "isn't working" (pun again), because that's sham normal, not real normal. Normal no longer to me means the way I used to live, or defining myself by how I perform, what I attain, it's the way I was supposed to live, meaning loving self-care, and thus having real time for myself, people, happiness, living intensely in the moment, rather than wasting away not able to do anything properly any more. (That said I have performed and attained more than enough in my life in all kinds of areas, so it is time to say goodbye anyway. But if I hadn't it would be too...)
I'd definitely apply for PIP, see what @Badger recently advised on the other thread, you can get it even whilst working, and the UK also has another benefit for people working I seem to remember.
So... do it for your husband. And look for alternatives at the same time so that you don't fully rely on him.
I didn't tolerate any of the 6-7 meds that were given to me, so: no.
If I were to try again, I'd switch them quick if they don't work, and even quicker if they harm.
If at all, I'd again start with amitriptyline, which I managed to stay on despite 8 side effects for 4 months - too long! Then try duloxetine/Cymbalta, then pregabalin/Lyrica rather than gabapentin/Neurontin. But reckon with none of them helping much and possibly harming a lot.
Instead I'd (= we here'd) recommend getting all your bloods checked intensely for vitamin (A, all 8 B, esp. B12, D and E) & mineral deficiencies (e.g. iron, copper, zinc, phosphate) as well as of course all possible markers, and supplement for these deficiencies, also identify and target your symptoms with all the 100s of mental, physical, dietary, trigger preventing and supps you can find here, praps starting with sleep....

Hi, thanks for your reply.
I’ve had all my bloods done and I’m deficient in vitamin d and folate so I’m on supplements for those and I also take duloxetine. I was on the highest dose but I had to cut it down because It made my brain fog a thousand times worse. I also take turmeric and magnesium and them some super food supplements.
You’re right I need to change my thought process, I’m really trying. X

 

[Katie0133]

yup, I had a very similar experience with it... I took it at night, before bed to try to help me sleep better (didnt work great) and the continued fatigue during the day made me finally ask my doc to go off it.
Duloxetine/Cymbalta did basically nothing for me
Fluoxetine/Prozac (used off label for neuropathy) made me so exhausted I could barely stay awake during the day, even after sleeping all night (and still not feeling rested)
Nortriptyline/Pamelor (also used for neuropathy) gave me tremors
For me, meds dont seem to help much and/or have unwanted side effects. However, there are those that do reasonably well on certain medications.. It varies for everyone.

I would suggest telling your doctor that the gabapentin is making the fatigue worse and you would like to stop. If your doc is a decent sort that actually cares, they will listen to your concerns, and work with you to try to find something that works for you, or no meds at all, if that is the way you want to go. The choice should be up to you.

Unfortunately I don’t ever get to see the same doctor and they don’t really seem to care. They just up whatever meds I’m on and send me away.
I’ve been seeing a mental health nurse for my low mood but she’s half my age and seems to compare me to her mum!? Very strange.

 

[Katie0133]

Hi Katie - welcome. How is your actual sleep? We are constant aware while sleeping with fibro…be sure to set up a nighttime routine. Gabapentin helped at first with my diagnosis but have cut it in half and added low dose naltrexone and I also take small dose duloxetine. I also take supplements and not yet a year on a cpap machine for hypopnea. Have your thyroid checked if havent already. Be kind to yourself. I work full time and have figured out pacing but obviously am way from perfect. One day at a time. You got this. Everyone is different.

Hi,
Yes I’m also on duloxetine and I take loads of supplements! I’ve had my bloods done and I am deficient in folate and vitamin d so I take supplements for those. I don’t have a great diet because I get so tired that I skip meals, not good but I’m so exhausted. My low mood doesn’t help, I’m struggling to pace myself because as soon as I step into work I try and mask it.
X

 

[cookiebaker]

Unfortunately I don’t ever get to see the same doctor and they don’t really seem to care. They just up whatever meds I’m on and send me away.
I’ve been seeing a mental health nurse for my low mood but she’s half my age and seems to compare me to her mum!? Very strange.

Very sorry to hear that - you should have one primary doc - if you dont, then perhaps you should see about trying to change clinic locations.

I see you say you take magnesium? are you deficient in that? what dosage are you taking?
too much magnesium can cause problems, just as too little can. It is generally not recommended to supplement vitamins/minerals unless you are known to be low in it and magnesium can be found in a lot of foods.

 

[sunkacola]

Hi Katie,

One of the hurdles that we all have to face and deal with and get over when we have fibromyalgia is the acceptance of the fact that we have to change how we are doing things. For most of us that means giving up or partially giving up something important to us, whether that be a job or projects or backpacking or long road trips or whatever it is. This is a huge challenge for everyone.

I understand your reluctance to cut down on or leave a job and also your distaste for replying on your husband. Makes sense to me. But here's the most important thing: Anything that is making your symptoms worse, whether it is a medication (in your case gabapentin), or an activity, or a job, or a person, needs to be either only partially in your life or cut from your life entirely. I know this sounds harsh, but the truth is that it is virtually impossible for things to improve for a person who keeps doing something, no matter how much they want to, when it is making their fibro symptoms worse.

sometimes it is possible to put something aside, get stronger and better able to manage fibro, and then go back to it for part of the time, or in a modified way, and that could be the case for you. But if you simply keep pushing yourself through the pain and fatigue it is very likely that it will only get worse, and the end result will be the same except that you will be worse off physically than you are now.

I also recommend rethinking the concept of "fighting for normal." There are many many kinds of normal. A blind person is normal, a person in a wheelchair is normal, and so on. sometimes the "normal" we are accustomed to changes and there's nothing we can do about it (ie: Pandemic).

When this happens, fighting what is, is only hurtful. Spending time fighting something you cannot change wastes precious energy that can be better used. The best approach is to accept what is right now, and then learn how to manage the current circumstances the best way you can. This is very do-able with fibro. You can have a normal life, just not the normal that you used to have.

Here is my post with suggestions on how to go about learning to manage your fibromyalgia the best you can.
We are here to help and support you.
My advice for managing fibromyalgia (especially for newcomers)

 

[sweetkamie20]

Hello, I really empathize with your feelings - not wanting to be forced to do things like sleep, rely on others, etc. Thinking I’m a burden/disappointment to someone leads me to one of the most dreadful feelings!

Fibro woke me up to the fact that no one around me really looks at me like a burden! I put myself in my husband’s shoes and asked myself, “If my husband got sick, would I resent him or consider him a burden?” No! I’d look at him with more compassion than before! I would see all the things he tries to do as more significant than before.

Sure there’s days when one of our loved ones might be a little battle-weary accommodating fibro but, at the core, they love us more than they hate fibro ❤️

I think when things slow down and you start figuring out how to manage fibro you’ll find a lot of these negative feelings you are having will recede. My “shortcut” tip for others is to really listen to your body learning what causes flare ups or worsening symptoms. As you figure those out you’ll be able to evaluate things that will buffer you.

Thank your husband often and especially when you start ti feel like a burden and reassure him by sharing that you have hope for improving. When I realized my husband was fearful I’d never get better, I told him that I was expecting progress. The relief he had just hearing me say that took the dark cloud off of him.

Your husband is a precious gift. And so are you. Love him with what you got and let him love you with what he’s got

 

[hope23]

Hi all,

I’m new to this forum, I felt like I needed to reach out to like minded people for advice and to talk to people who understand.

I’m currently in work full time but dropping down to three days after one more week. My boss asked me to continue for two more weeks because staffing was so short, me being me so ‘ok!’ Even though it feels like it’s killing a bit of me each week that goes by. I can’t say no, they know that.
I really would love to give up work completely, I know it would relieve so many of symptoms as I could rest when needed but I don’t want to re reliant on my husband. I don’t want to give in on a job I tried so hard for.
Does anyone else feel like this. Fighting for my last bit of normal.
I’ve been told by my OT to apply for pip so it helps towards the money I’m losing by going let time but I can’t help but feel like it’s another battle that I can’t win, like they believe me because I work.
I get so fatigued that practically any time I’m not at work im sleeping. My poor husband didn’t sign up for a wife that’s moaning and sleeping still the time.
How do you guys cope with this?
Also are you on medications that work? I’ve recently been prescribed gabapentin but it’s making my fatigue so much worse.

The pain, heartache and sense of loss, as well as the concern for the what ifs and unknowns, of the struggle for your husband(whether he feels that way or not) as well breaks my heart.
What i will say is this, if you have the options to lower your hours, meaning you can rest as needed and put the love and selfcare you need to, (both into yourself and into your husband) then do it.
Despite the fact my partner met me when i was crook and proposed knowing all of this, reducing hours working less was not an option for me/us, for a number of reasons my partner couldnt handle my being crook and all that involved and there was love and affection, and just sitting down to a movie together that he wasnt getting out of the relationship. As a result he couldnt do it anymore and we have separated.
If you have the option to make life easier for yourself and care for yourself better then do it, for yourself and for your husband.
Purely from a fibro point of view, what i will say is this, give everything you can a try, alternative therapies, different forms of exercise(when and if your up to it, routine is important with exercise for us fibromites but so it listening to your body), different diets, and if theres medications that can help(without nasty side effects that do more harm than good) then thats ok. For me personally ive tried every alternative therapy available to me, i exercise as and when i can(even if thats just walking to the letter box and back) ive tried a number of different diets even one based of hair allergy tests. For me though its a combination of a number of medications that allows me to function as a human being. My medication are:
- amitriptyline 100mg (this had been my most effective medication up until a flare up in jun 2022 that hasnt ended)
- celecoxib 200mg 2 x a day
- orphenadrine 100mg 2x a day
- pyridoxine(b6 supplement for ulcer outbreaks)
- diazepam 2mg up to 2 x a day
- tramadol 50mg as needed
- codeine 30mg as needed
- panadol as needed

I agree its helpful to discuss medication and whats working for other but the biggest thing ive learnt is that medications work differently for all of us and just because the above works for me does not mean it will work for others.

Absolutely try everything you can and often its a case of finding enough things that help just a little and it all adds up. What i will say is this though, if alternative therapies dont work or arent enough and you do need to work with a medication based treatment plan dont beat yourself up about it. You need to do what you need and what works for you, whatever that may be.

 

[fibrofoggirl]

I ended up quitting my full time job shortly after my car accident that triggered fibromyalgia

then I worked part time jobs & got massotherapy weekly with a massage therapist who had training for fibromyalgia patients....helped me get through work week

the massage therapist is the one who said "I think you have fibromayalgia"
that's when I went to a rheumatologist who diagnosed me

 

[doni]

I'm right there with you. I haven't cut my hours yet but dream of doing so as soon as we've done some things that require a bit of money. It's so disheartening to feel like all you do is go to work and then go to bed. My husband is great but I know it's hard on him.

I've read all the replies and they're great. I did notice that one medication hasn't been mentioned (or I missed it). There are only two meds that have helped me in the 10+ years dealing with fibro. The first was Cymbalta (duoloxitin) which was mentioned and worked for the first several years. In 2016 I switched to Savella which I think is the first medication that is specifically for fibro. That also worked for several years (about 4-5 years). When it quit working I stopped fibro meds for about a year until I found out I can try Cymbalta again. I started that a couple of months ago. If you haven't tried Savella, it might be worth giving it a shot.

 

[JayCS]

The first was Cymbalta (duoloxitin) which was mentioned and worked for the first several years. In 2016 I switched to Savella which I think is the first medication that is specifically for fibro.

Almost: Meds approved for by the FDA in the US for fibro are (only):
pregabalin/Lyrica since 2007, duloxetine/Cymbalta 2008 and milnacipran/Savella 2009.
Milnacipran is actually proven least effective of these for fibro, so if meds are unavoidable I'd rather suggest trying amitriptyline/Elavil even tho it's not approved, because studies say it's comparably effective to the first two. Gabapentin/Neurontin would be another one, with evidence for pain, but wasn't tested for or against in studies specifically for fibro, cos pregabalin was developed to try to get its side effects down.

 

[sunkacola]

One thing I find very important if you do stop working is to remind yourself that y ou still need to move your body every day.

There can be a tendency to stop moving because we need the rest after pushing ourselves too hard working a job. But you have to keep moving. Obviously not as hard as you were, and taking good rest periods and getting enough sleep is very important. But I found that the tendency was to lie on the couch some days and had to remind myself to stop that and get out and walk and do other things. Not all day long, maybe not every day even, but more days than not and enough to keep in shape. Carefully and intelligently, but moving every day is vital.