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Chronic pain

CHRONIC PAIN- accepting your diagnosis.

56 replies

picklemewalnuts · 08/03/2021 14:10

I'm sure I'm not alone- I was diagnosed with Fibromyalgia when my thyroxine, vit D, Iron, Vit B etc were all ruled acceptable but my pain and tiredness remained.

I keep hoping I'll find the missing nutrient, sort out HRT, discover a trigger... and be well again!

I also comb my history to try and pin down when it started.
I head off down rabbit holes about multiple chemical sensitivity etc.

Anyone else want a chinwag about accepting your diagnosis?

OP posts:
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Hushabyelullaby · 08/03/2021 18:46

I live with chronic pain (have MS), so am really sorry to see so many others coping with pain too. For me it goes through stages of being all consuming and draining, both always there, but to differing degrees depending on the day.

I am on Tramadol, paracetamol, and ibuprofen for the pain. Some days it's enough to take the edge off, and other days it barely touches it.

I've had MS for 15 years, but this level of pain has only really been an issue since the beginning of 2020 (I've been massively impacted by lockdown). I find that my pain can sometimes be helped by exercise, which is pretty hard going as I'm a wheelchair user so use a special gym at a local Neuro Therapy Centre. I get physio there too. Does anyone have a centre like this near them? I'd absolutely recommend it if you do.

Acceptance of my illness happened many years ago, however acceptance of the pain is a different thing. Until last year I suffered very little hence not having fully accepted the reality of it yet.

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RightYesButNo · 08/03/2021 19:25

@MrsAvocet @picklemewalnuts @doadeer I’m making the assumption here that you all have male partners, so apology if that’s incorrect, but there’s a lot out there on how differently men deal with chronic illness in their partners vs. women. I think this is by far the biggest thing, though: if you are a woman diagnosed with cancer or MS, there is a 20% chance your husband will leave you. If you are a man diagnosed with cancer or MS, there is a 2% chance your wife will leave you. I mean, that’s ASTONISHING. And as you see in this article, neuro-oncology doctors actually requested this study be conducted because they noticed when their patients were getting divorced, it was always women.
www.sciencedaily.com/releases/2009/11/091110105401.htm

And I do think it has to do with how many men are socialized: that problems are meant to be fixed, that you should be able to fix your problems ALONE, that your ability to fix your problems is tied into your identity as a man, and as a result, most problems should be of limited duration once you find the solution. Whereas women may have already seen lingering illnesses in their family being “handled” by another woman (for example, your mum caring for your ailing grandparent) and therefore be more mentally equipped to seek the support of friends and family, and do the things necessary to “accept” a partner’s illness (maybe not accept it emotionally because it can still be terrifying and horrifying, but in a not-just-going-to-leave-my-spouse way).

I find with my DH that we’ve gone through phases where he treats my illness like problem-solving and then phases where he accepts that we’ve already probably tried 200 different things by now, and while I know we have to keep trying, I’m exhausted and in pain and even though that’s currently the status quo, the world hasn’t ended... even if it feels rather like shite sometimes. We definitely have days now where he accepts it better than I do.

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MrsAvocet · 08/03/2021 19:51

Oh yes, @RightYesButNo, my DH is a problem solver par excellence! To be fair, it is very useful at times. Like when I was discharged from hospital and the promised "urgent" OT home assessment didn't happen but I needed to figure out how to shower, use the loo, get dressed etc with multiple broken bones. He was a gem when it came to finding answers to stuff like that. But he applies the same thought processes to everything else too, which is less helpful!

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Ouchwtfthistime · 08/03/2021 20:01

DunravenBadger I can relate to that! Having a good day - you see, stop overreacting, nothing wrong with you...later that night, ouch wtf this time!

Those stats are scary. I'm single, have been for many a year, I can't ever see me being bothered about a relationship tbh, I don't have the space to even think about it.

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MyVisionsComeFromSoup · 08/03/2021 20:12

slightly controversially, I take pregabalin (online groups seem very mixed as to whether it's a good thing to take, and whether doctors will let you have it even if you want it), and its working reasonably effectively for me (as well as amitriptyline, magnesium and a vit d spray). I do worry a little bit because I'm definitely dependent (rather than addicted), and having moved last summer, and with another move planned this summer, a new GP might not be quite so happy to carry on repeat prescribing.

Plus because its now a controlled drug, having to take my passport to to Asda to collect the prescription, and only getting 28 days worth at a time, is a bit of a nuisance!

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sweetkitty · 08/03/2021 20:19

Erm me I’m currently going down a vitamin B12 rabbit hole. I’m vegan and have always supplemented my diet with oral B12, my bloods have always been fine now the oral B12 could be falsifying the results but I would have to wait 4 months to get it all out my system then retest, if I was low I would only get 3 monthly injections anyway which aren’t enough so I’m thinking of just self injecting. What have I got to lose? You can’t OD/it won’t hurt? (I’ve read lots of medical journals)

I’ve been on pregabalin, duoxetine and amitriptyline all with horrible side effects. Currently just take dihydrocodeine when it gets too bad.

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greybluegreen · 08/03/2021 20:35

@MyVisionsComeFromSoup

slightly controversially, I take pregabalin (online groups seem very mixed as to whether it's a good thing to take, and whether doctors will let you have it even if you want it), and its working reasonably effectively for me (as well as amitriptyline, magnesium and a vit d spray). I do worry a little bit because I'm definitely dependent (rather than addicted), and having moved last summer, and with another move planned this summer, a new GP might not be quite so happy to carry on repeat prescribing.

Plus because its now a controlled drug, having to take my passport to to Asda to collect the prescription, and only getting 28 days worth at a time, is a bit of a nuisance!

I was prescribed pregabalin when diagnosed with Fibro but my Dr doesn't want me to take it, she says it does more harm than good. When I'm in pain like I am now, I'm wondering if it would have helped.

Supplements I take:

Magnesium 500mg (Pain/Anxiety/Sleep)
B12 (I'm vegie/vegan)
Multi vitamin and mineral
Starflower oil (Peri)
D3 4000 iu
Fish oil (Depression/Brain fog/dry eyes)
Pro biotic (I take a pro biotic now and again, have just finished a course of antibiotics)
Hyaluronic acid (I have really dry eyes)
5 HTP (Depression/Sleep)

I've recently had a load of blood work done and all my vits/minerals are great.
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DunravenBadger · 09/03/2021 06:23

I take pregabalin too. For me, personally, I find it does more harm than good. I'm trying to come off it now and actually finding my pain is improving. It's taking months to come off though because of withdrawal effects.

Good days, or good parts of days are definitely the worst for denial. I went for a walk at the weekend. The first part was fine and I was in major denial. Last part not so great and a couple of days later I'm still sore.

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MedusasBadHairDay · 09/03/2021 09:20

@DunravenBadger

Oh gosh yeah. I keep thinking maybe one day I'll wake up and be totally fine and I just made it into this whole big deal and over reacted . Hasn't happened yet though. Ugh!

Occasionally I dream that I'm cured, then I wake and have to grieve for what I've lost all over again.

For the most part getting a diagnosis was good, it helped me find ways to manage the pain and allowed me to free up some mental space that had been occupied with worry about what was wrong with me, but I'm not sure I've come to terms with the "forever" aspect of it. There's still a bit of me that thinks it might stop one day, and I can't seem to wipe that thought.
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fairyannie · 09/03/2021 09:33

@picklemewalnuts

I'm sure I'm not alone- I was diagnosed with Fibromyalgia when my thyroxine, vit D, Iron, Vit B etc were all ruled acceptable but my pain and tiredness remained.

I keep hoping I'll find the missing nutrient, sort out HRT, discover a trigger... and be well again!

I also comb my history to try and pin down when it started.
I head off down rabbit holes about multiple chemical sensitivity etc.

Anyone else want a chinwag about accepting your diagnosis?

I have an under active thyroid (Hashimoto's) and was later diagnosed with fibromyalgia. (Fatigue, joint pains, bowel probs.) I accepted these chronic conditions and learned to manage these as best I could.

Turns out I have hEDS - only just diagnosed and I'm mid fifties.

Still chronic condition I have to self manage.

I was diagnosed privately and the recommended treatments aren't available on the NHS. 🤔

The consultant assumed I had private medical insurance - which I don't.
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YouTediousShit · 09/03/2021 10:04

Hi everyone. I've been reading this thread and the one discussing the need for a chronic pain board. I'm in a similar situation. I have arthritis and hypermobility disorder as well as a few other issues. Fibro was also briefly mentioned during some physio appts, but then brushed off. I've been diagnosed with IBS, I'm on HRT for perimenopause. It's working with some of my issues, but I'm still in pain, fatigued and putting on weight. This makes me slower and more tired. Vicious circle...

I've printed off the latest info from the internet as im absolutely convinced I have hEDS. I asked the Rheumatologist when I saw him last year but said no as I don't necessarily have the stretchy skin. I tick nearly every other box though. I'm going to ring up today and ask if I can have a review. Whether that diagnosis would lead to better pain management, I don't know? Like the PP, there's not much available on NHS. Especially at the moment. So I keep chugging the codeine and occasional Amitriptyline on bad nights. I'm also taking magnesium and a few other supplements. Hoping to get back to swimming soon, but I get really paranoid about my pain / balance and am scared of slipping. I'm 49. Single parent to 9 year old DD. I want to not be so bloody crocked. I don't want her ending up my carer. Going to have another crack at losing some weight too.

Sorry that was a bit of a ramble there...

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MyVisionsComeFromSoup · 09/03/2021 10:05

fairyannie - I also was diagnosed with hEDS, but only when DD2 was being investigated as a co-symptom of her POTS, and I went to the appointment with her. The consultant also diagnosed my DM at the same time, as well as my other two DDs, which was pretty impressive as neither of them were there! Tbf, a lot of hypermobility diagnoses are done on describing symptoms/characteristics - Prof Graeme who we saw had a two page checklist (and seems to include "have you ever done ballet, yes you're hypermobile" Grin).

DD1 found a physio was the most helpful for hypermobility - he was the only person she spoke to who could explain things in a way that she got (the rheumy she saw told her that an eye condition she'd had didn't actually exist, and that "everyone is a bit bendy") - things like, with hypermobility you very often sit badly, but don't realise until much later than the average person would (because it doesn't hurt to overextend joints) and then it can hit you with a wallop. And to switch up between different pens and pencils when writing (she was at uni at this point) especially in exams to force a change in grip and reduce pressure on finger joints, meaning you can actually write for the whole three hour exam.

DD2 has mostly come to terms with her condition (although she does have down periods, but they're not as bad as the ones where she'd be lying on the kitchen floor sobbing her heart out cos it was Friday evening, she was 17, and there she was crying on the floor not able to stand up when her friends were all out partying) - for her, realising that it would always be there, and she could choose to let it "win" or choose to fight, was a big one, and secondly that it wasn't as big a deal to anyone else as it was to her, and so holding off on committing to a boyfriend because "it wouldn't be fair on them to have to deal with her" was actually unfair on him.

A good friend said once about another condition we both have (not pain related) "I have x condition, it doesn't have me" which has been a bit mindblowing to a lot of people in talks she gives, that realisation that yes, it is possible to get on with your life while having x condition (albeit a lot easier when it's not one which causes pain admittedly).

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picklemewalnuts · 09/03/2021 11:32

That's a good phrase, Soup!

I thought I may have EDS, but rheumatologist said no.

Do you get stretch marks with EDS? I have loads, so perhaps don't have it.

I have some hypermobile joints, sit badly, find standing still painful, Reynauds, bruises etc. Hey ho.

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Skap · 09/03/2021 11:50

I have RA which causes pain and fatigue and various other conditions which largely don't. The Rheumatologist says I have fybromyalgia but I don't accept that. I have a tendency to get tenosynovitis and rotor cuff pain as well.
I find the fatigue difficult to deal with, I long to be energetic.
I make myself exercise though I don't enjoy it.
RA was appalling for ten months last year after I had chemo for breast cancer. It settled for a while but I have a flare/ inflammation right now.

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Grimbelina · 09/03/2021 13:03

This is the most incredible thread for me to read... I am so interested that EDS is coming up time and time again. I'm quite sure (neuro thinks so too) that my family has a genetic connective tissue disorder which is causing a range of issues from a Fibro/MS type condition (holding diagnosis at the moment, looks like MS but clear MRIs) to atypical ASD's (diagnosed) plus the CFS/ME vulnerability following a virus. Both my children and I have hypermobility and there are loads of other markers.... where we go from here with this is difficult though....

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huuuuunnnndderrricks · 09/03/2021 13:35

I have hashimotos too.. does that cause your pain?

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greybluegreen · 09/03/2021 15:31

I was diagnosed with EDs and was under investigation for POTS when Covid hit.

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redpandaalert · 09/03/2021 16:25

Do any of you work? I’m struggling to carry on working, have been WFH due to Covid and it’s really helped. Have had a bad flare up for the last 3 weeks and today I’ve thrown in the towel and called in sick. I can’t see myself going back to work this week - in a cycle of pain/insomnia. Am improving my diet and exercising every day so hoping I see some benefits but with 2 kids (one with SEN) plus work only I have zero free time and I’m permanently exhausted and in pain. I don’t know whether to get signed off work for a period to try and get better.

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DunravenBadger · 09/03/2021 16:53

@redpandaalert

Do any of you work? I’m struggling to carry on working, have been WFH due to Covid and it’s really helped. Have had a bad flare up for the last 3 weeks and today I’ve thrown in the towel and called in sick. I can’t see myself going back to work this week - in a cycle of pain/insomnia. Am improving my diet and exercising every day so hoping I see some benefits but with 2 kids (one with SEN) plus work only I have zero free time and I’m permanently exhausted and in pain. I don’t know whether to get signed off work for a period to try and get better.

I'm studying currently but have worked in the past. I've had to have long periods off at various points though. Being signed off for a few weeks may help you get things back on an even keel.
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MedusasBadHairDay · 09/03/2021 16:57

@redpandaalert

Do any of you work? I’m struggling to carry on working, have been WFH due to Covid and it’s really helped. Have had a bad flare up for the last 3 weeks and today I’ve thrown in the towel and called in sick. I can’t see myself going back to work this week - in a cycle of pain/insomnia. Am improving my diet and exercising every day so hoping I see some benefits but with 2 kids (one with SEN) plus work only I have zero free time and I’m permanently exhausted and in pain. I don’t know whether to get signed off work for a period to try and get better.

I do now, but had a long time off before I learnt ways to manage my pain (luckily it is kind of manageable). If you are struggling then it's not a bad idea to get signed off, a bit of rest may help you get back to a more manageable place.
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picklemewalnuts · 09/03/2021 18:50

I work very few hours- I'm not sure I could increase them if I needed to. It's not just pain and tiredness, it's brain fog. I can't actually do the job for any length of time, I just start dithering about!

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MrsAvocet · 09/03/2021 18:51

I've not worked for quite a long time and today, much to my great surprise and delight, after a long drawn out process I finally got a letter saying that my application for early retirement on ill health grounds has been approved. I won't go into details as I think my full story would be extremely identifiable, but my ex employers treated me like absolute shit and I cannot begin to express how delighted I am about this. Not only from the financial perspective, though that is, of course, good, but I feel positively elated to be completely free of my bastard line manager and the generally toxic environment I worked in. It's the end of an era but feels more like a new beginning and I'm happier than I have been for ages today! 🙂

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Akire · 09/03/2021 19:24

That’s great news start of a new dawn indeed!

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DunravenBadger · 09/03/2021 19:25

Thanks fantastic news @MrsAvocet Smile

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redpandaalert · 09/03/2021 19:58

That’s fab news, I really don’t think toxic environment help . I need to work for another 6-7 years and at the moment I just don’t know how I’m going to do it.

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