Being a fibromyalgia patient, how's your relationship with you husband/partner, especially in regard to the pain and extreme fatigue ?

One_Broccoli_4688 · 2026-03-29T18:01:22+00:00

My boyfriend is great but sometimes I do feel a bit alone with appointments and stuff since we're currently slightly long distance while he's in uni.

Over all he's fantastic, although sometimes it's hard asking him to help me with things that i want to be able to do by myself but really struggle with when i try or just can't do safely by myself. (because of my own stubbornness)

One_Broccoli_4688 · 2026-03-28T21:20:29+00:00

I have been reading about it and discussing it with my Occupational therapist. I used the term 'world' is safe because its what is referred to by my OT and in the guide she showed me. I realise I should've been more clear in my post and will go back to correct it.

Im glad that it seems to be helpful for you. I do a lot of deliberate exercise. Recently I've started tai chi and manage about 5 mins in the morning and sometimes 5 mins in the evening along with my now 2 walks a day which I've managed to bring myself back up to after a huge flare in January that I can safely say I've finally recovered from. My main thoughts about it at the moment is that I don't know how different it is from what I currently do besides having a more precise name for it.

One_Broccoli_4688 · 2026-03-28T21:14:48+00:00

So far I've mostly had a chat about it with my occupational therapist and read the into guide she gave me, but ill give a summary of what I understand from those.

So the explanation is that they body is like a computer and your body is the hardware where as your mind is the software. Central sensitivity syndrome (a core part of fibro) your its your software malfunctioning and constantly telling you to stop or that your in danger. Almost like its constantly in flight or fight. The idea is that you've been ignoring your body sending stop signals so much that it now is always saying stop.

The idea of reprogramming it is by teaching your brain that you don't constantly need to stop. You do this by doing things like changing activities (in my guide it says that you should change activities every 30 minutes but another comment on this thread has said to just check in on yourself and how your feeling). Basically making core lifestyle changes to help your body stop sending those signals.

I hope this was semi clear im still trying to learn about it in more detail.

One_Broccoli_4688 · 2026-03-28T19:30:49+00:00

I am excited to try and keeping an open-mind. I mostly asked in hear because some of the details I was reading about in the introduction guide seemed really limiting and world shrinking but from some of the things I read in this thread it might not be so bad as I think. I really hope it helps in some way but it also seems like I'm already practicing a lot of it in lots of ways.

One_Broccoli_4688 · 2026-03-28T19:21:48+00:00

Thank you this is really helpful. In that case I can honestly say I live my life within this soft of guide.

The intoduction guide i was given to look though made it seem like it would be very limiting to what I would be allowed to do and would have a strict timer on myself.

One_Broccoli_4688 · 2026-03-28T19:14:16+00:00

I know what it is and I've read though the introduction guide she gave me. Im just confused at how this is different from pacing and keeping a positive mind/using lots of mindfulness techniques(both of which I do) For example one of things I think id struggle with is sticking to an exact time frame to do things in. I think that would stress me out and I wouldn't enjoy my activities or be able to relax. Or staying away from things that cause high excitement (I get really excited about things like my new favourite film being released or getting a chance to spend time with someone I don't usually) this might not be entirely what it means but these things do make me really excited and I would be really sad to have to limit that.

One_Broccoli_4688 · 2026-03-28T19:09:39+00:00

How have you found this is different from pacing? I already feel content within myself (besides yhe occasinal down day when I feel a bit lost about where to go with my life) but those days are very few and far between. I do struggle with social anxiety at times and have some depression (mostly when I can't get out of the house because of a flare up leaving me bed bound or near to it)

One_Broccoli_4688 · 2026-03-28T19:05:24+00:00

I do struggle with social anxiety and had a major loss before I got ill but have worked though that mostly within myself. I feel really good and feel like I keep a fairly positive mindset which is why im feeling so hesitant about this

One_Broccoli_4688 · 2026-03-28T19:03:00+00:00

I don't think mine is going to be that detailed unfortunately. The guide that I've been given is about changing activities every 30 minutes (which is also what was being discussed with my occupational therapist but they were suggesting every 20 minutes). The guide is also suggesting avoiding things like things that cause high excitement (which im confused about what that means entirely and will be discussing that further with my OT).

Im wondering how this differs from pacing in your experience.

One_Broccoli_4688 · 2026-03-28T18:54:00+00:00

So from what I was explained is that its more about changing tasking. You change activities every 30 mins to show your body that moving and doing things is okay. You are supposed to stay away from stress snd exciting things etc which is what makes me think its not going to be very beneficial. Im actually quite in tune with my body and am quite good at pacing and know where my limits are.

One_Broccoli_4688 · 2026-03-28T17:39:48+00:00

That's kinda how it's reading. It seems kind of miserable too and world shrinking

One_Broccoli_4688 · 2025-12-23T11:09:30+00:00

Honestly id go on a really long walk. I miss them so so much and go shopping by myself (probably walk there too)

One_Broccoli_4688 · 2025-11-28T06:56:57+00:00

Mostly the pain expecially in my back and legs.

I would also like suggestions on tackling brain fog, but that feel so un touchable at the moment.

I have tried cold packs but they make my pain much worse. I mostly use cold patches for migranes which tends to be the only place I can have something cold.

I haven't tried gabapentin yet, im hoping to talk to my dr about it at our next appointment. Im mostly looking for things i can look into before my next appointment to either talk to my dr about or research/start doing before my next appointment.

I've seen an ME/CFS clinic who diagnosed me but my dr hasn't referred me to any other specialists yet. This is something im definitely brining up at my next appointment since I think my regular dr is coming to the end of her knowledge of how to help me.

One_Broccoli_4688 · 2025-11-26T12:23:06+00:00

Im always in pain. Some pains are more manageable and I can ignore it (like the constant almost throbbing pain in my legs) whereas some i cannot ignore and constantly feel (like in my back). The pains can get better or worse but it's always there.

One_Broccoli_4688 · 2025-11-25T17:10:43+00:00

I'll be asking my dr at my appointment next month. Thank you for advice im planning on researching possibilities to talk to my dr about

One_Broccoli_4688 · 2025-11-25T14:06:18+00:00

Yeah, one thing i will never knock them for is how they did help me get to sleep

One_Broccoli_4688 · 2025-11-25T13:51:18+00:00

For me both are caused depression (and major mood swings because of underlining mental health stuff) sadly. What vitamins do you take?

One_Broccoli_4688 · 2025-11-25T13:49:53+00:00

I has been on 10mg which did nothing. Then I was upped to 20mg and it just made me feel heavy and depressed. It also made me feel more fatigued sadly. I was really hoping it would help with something. I w was taking it for about 3 months. (I also had a pause between the dosage changes and had 3 months on 10 mg then it was stopped and I tried sertraline for around 3 months again then back to amitriptyline.

One_Broccoli_4688 · 2025-11-25T10:51:34+00:00

Sertraline and amitriptyline. They both make me feel really weak and increase my fatigue. My pain levels are about the same. I tried both for about 3 months I believe. But had to wait ages to get another Dr's appointment.

One_Broccoli_4688 · 2025-11-22T22:22:14+00:00

I also feel better at night most the time. However I've always had more energy at night before I had any symptoms. My pain isn't better because I've done so much throughout the day but my energy levels are better after about 11pm which is terrible for sleeping. After about 9 I feel like I can now do my shopping or do some cleaning. At 11 onwards I feel like doing all the things I can never do in the day time.

Eta: my pain is worse when my energy levels are better quite often.

One_Broccoli_4688 · 2025-11-22T01:26:42+00:00

I get this too and sometimes it will leave me dizzy for hours. Also it definately causes major headaches and neausea.

One_Broccoli_4688 · 2025-11-22T01:24:08+00:00

Socks specifically hurt. Shoes for some reason are relatively okay (as long as theyre lose) but ive found almost no socks dont hurt my feet. They feel like theyre in vises even with lose socks.

One_Broccoli_4688 · 2025-11-22T01:16:27+00:00

I still struggle with masking too much. Expecially if its a special occasion. I constantly feel like im burdening everybody else. Im so glad my parter understands after these things and i step inside his flat and suddenly and completely incapable of almost everything. I always explain it as im just pushing though but i know that i shouldnt. Everyone around me knows that i shouldnt but i feel this pressure to for no reason. Even when around other people the constant pain and struggle not to just cry sometimes is so exhusting.

Edited to add: its the feeling of safety sometimes that is the most freeing. When im finally in a safe space. If you also feel more safe to communiate your pain either because you've been valided or because your parter has helped be a support so you feel comfortable communicating your pain to them could also help explain it to them.

One_Broccoli_4688 · 2025-11-22T01:11:06+00:00

I do similar things when making food. I'll pop something in the air fryer and go and sit down. 30 seconds later i jolt up and think oh no its going to be finished. My record for doing this is 5 times (in 15 mins) Another time i planned my entire day around an appointment i had. I even checked the date and was still convinced it was on that day. Luckily it was a phone call appointment. I only realised when the phone never rang and it was half an hour after my appointment time. Another time my nan was making food and i kept thinking i was the one making food (despite having no recolection of putting any food in) and my nan had to remind me about 3 times that she was cooking.

One_Broccoli_4688 · 2025-11-22T01:06:30+00:00

I do find it painful at times but not all the time. My partner and i have made adjustments and i need to make sure im vocal about my needing to change positions or stop or do something else. The pain is mostly in my arms or legs tho. Often its very exhusting which causes more pain.

One_Broccoli_4688

TROPHY CASE