Fibromyalgia?

[year5teacher]

Hi,

I have posted here before about a chronic pain condition I have. I don’t know what it is. I have had blood tests for RA and EDS (I think, either way I’m not hyper mobile). I have had X-rays on the affected areas and nothing. I have had physio which hasn’t helped. I take vitamin D every day!

It’s a chronic pain in my hip and knee primarily on the left side although it also spreads to my ankle and affects both sides when it’s bad (like today). I am just in so much pain from the hips down and it’s been like it for YEARS, at least ten years. It’s not every day luckily but there seems to be no rhyme or reason to it.

I am also very prone to absolute exhaustion where I ache all over. I manage to stave it off at work but when I get home it hits me massively. Again not every day, but it happens a lot. I often feel generally unwell. I also have always had lots of IBS symptoms.

It’s hard for me to know if this is just normal for being a human. I’ve always thought it sort of is, but my DP, family, friends etc don’t seem to complain of the same things. My job is certainly exhausting which doesn’t help, but it’s been going on for much longer than that. I’ve had to take codeine today which I don’t like doing when I’m at work although it’s only a v small dose with ibuprofen.

I don’t seem to have brain fog though, obviously when I’m tired I do but I doubt any more than anyone else.

I’ve always dismissed fibromyalgia when it’s been suggested but now I’m wondering, as I just don’t see why both my legs would be so painful so often for seemingly no reason. I often ache all over and feel like my clothes touching my skin hurts.

Can anyone who suffers from fibromyalgia give any insight?

I'm going through similar at the moment, mine started with swollen and extremely painful feet, pain spread to ankles, Dr sent me for x-rays which didn't show anything at all.

I was referred for physio, had 3 phone appointments, and was then discharged because they'd decided that it was a result of years of wearing poor footwear (high heels daily) and stress.

I also have swelling in my knuckles on one hand, and awful pain, my feet are less painful now, but I do take the maximum paracetamol & ibuprofen daily.

I have days when I wake up and can barely move, and some days when my pain is milder and I can perhaps half my pain relief, but I'm never without some sort of ache or pain.

I really hope that you get some answers, it's exhausting

Fibromyalgia is a diagnosis of elimination. So basically when they’ve ruled everything else out and can’t find an answer and your symptoms fit with fibro they’ll diagnose it. It’s no walk in the park and the symptoms vary from person to person. It’s also thought to be triggered by psychological issues so therapy is recommended a lot. Which is frustrating as it makes you feel invalidated.
I was misdiagnosed with it for 10 years but they eventually realised I’m hyper mobile and have had arthritis since I was a child. I’m now on biologics and hoping they build up quickly for some relief.
It’s very hard to comment on your condition because there are factors like weight, diet, vitamin deficiencies, insufficient exercise that can all contribute to the pain.
Have you gone to physio for the hip pain you experience?

Could it be trochanteric bursitis? This is inflammation of the bursa (a small fluid filled sac that sits just over the top of the femur). I think that’s what I have at the moment, possibly caused by a fall I had in November when my leg folded under me. It can last for years unfortunately, and I’m using Volterol gel, alternating with ibuprofen gel, which takes the edge off. Also an ice pack helps (sitting on one at the moment!)

@SassenachWitch that sounds horrible - it’s so frustrating when you just get fobbed off! I was once told “yeah it’s just sore muscles” - that’s a SYMPTOM not a diagnosis!

@Frolicinameadow yeah that’s what I’ve read. They’ve basically said they don’t know what it is and they just sent me away repeatedly saying to try physio, which I did and it didn’t help. I’m a normal weight and take vitamins so I don’t think it could be those things! I also have anxiety but I don’t think it’s linked. I’ve always dismissed it being fibromyalgia over the years as I just assumed it wasn’t but I’ve read about it more and now I’m wondering. DM said she’s often wondered if it is fibro.

@NanTheWiser I thought that initially but it’s basically like everywhere in my lower body including my lower back when it’s bad. It also wouldn’t explain the exhaustion and aches all over 😔

I've been recently diagnosed with fibromyalgia, after several blood tests, neck scan and x ray have all come back clear. Agree with PP that you are given that label when they have eliminated other potential causes, and it basically means 'widespread pain without a cause'. Note, I don't have any brain fog either, so I don't think that's a requirement for Fibro.

I've had a chronic pain condition now for at least 3 years. Initially it was in my shoulders/neck/upper back, and in the past year I've been getting lower back/hip/groin pain and at times aching all over. I think my condition has worsened to an extent this year due to reduced mobility caused by lockdowns/working from home, plus the pressure of home schooling at times.

I also relate very much to the fact I think I brought on my pain condition through anxiety. I suffered with anxiety symptoms for years and never wanted to take any medication. Looking back, I feel by not getting medical treatment, the anxiety has manifested itself in my body and caused a chronic pain condition. Your nervous system can get itself into a constant state of fight/flight rather than rest state, and this can lead to pain manifesting. Also, by having chronic pain, you can worry about it, think about it all the time and that makes it even worse. It's a terrible cycle that is hard to get out of - but possible.

And now for the more hopeful news...!

In the past six months a couple of things have happened to really help my management of pain:

I started taking duloxetine, which is a medication that treats anxiety/depression, but also chronic/nerve pain. Previously I'd tried a number of pain medications, but found they offered limited help, or the side effects left me unable to function. By chance my usual GP wasn't available so I spoke to another doctor in tears, he suggested this as another option. It's not really a pain killer, but does something to interrupt the pain signals between your body and brain. I kid you not my pain levels have decreased from 8 out of 10 so days to usually a 2 or 3 out of 10. I accept my pain will not completely vanish, but I'm much more able to live a normal day to day life.

In the autumn I went on an NHS pain management course. 7 sessions of 3 hours per week via Zoom, with a specialist psychologist and pain physio. It was community led through a MSK service. Although I'd done quite a bit of research myself, I learnt a lot more about the causes of pain and strategies to help both manage your pain but also focus your life on your values and what you want to get out of it. Personally for me, this has also led me to start yoga and breathing 3/4 times per week and I think it's massively helping to keep my emotions/pain in check. When I last spoke to the hospital consultant, I was told there was a similar Fibro management course available (I didn't need to do both) - I would really recommend speaking to your GP/hospital to see what is available in your area. It was also really good to speak to others about my experience, at times I felt I was the only person in the world suffering like this, but its not true!

I have so much to say on the subject, but thought this was good for starters. You are more than welcome to DM me if you wanted. I should be able to pull out some You Tube links for you that cover some of the pain theory in more detail. Would at least give you some food for thought, I felt I've had to do quite a lot of reflection in the past year to identify what may be contributing to my pain - often it's just the nature of modern life with 2020 added on for extra measure.

Take care

@yoshiblue thank you so much for taking the time to write this comment. What you wrote about anxiety completely rings true. I have such a fear of feeling anxious that when my body goes into fight or flight it’s just horrible and makes me worry so much, and I also really worry when I’m in pain or feel unwell. I always thought it was just me having a very low tolerance for the aches and pains that everyone has. I’ve also had anxiety my whole life so they could definitely be tied up together.

It just makes me wonder what else it could be as they’ve ruled out quite a lot and it just hurts in so many areas. I just want an answer at this point.

I sometimes just feel at the mercy of my body, like I worry that my evening will be taken over by exhaustion and pain and then I feel I’m thinking myself into it. Such a cycle and I end up blaming myself. Sorry to vent to you! I have spoken to my GP to book a test for coeliac disease as it runs in my family and I think (although I have had two negative tests in my childhood) that will be the only other thing I can think it would be (not that I have any idea!!)

I also have random patches of skin that hurt when I touch them and I always thought that was normal too.

Thank you so so much for taking the time to post this I will DM you for any YouTube links!

I'm glad my ramblings were of use. Yes drop me a line and I'll find some links out for you.

Also, before going on duloxetine, I had remote CBT in Spring last year during the first lockdown. I wanted to do CBT rather than take medication and I felt the lockdown situation of both working and school tipped me over the edge. I'd really recommend looking at that too. I got referred to my local service by my GP, but you can self refer as well.

NHS referral

I had an initial phone assessment then had 6 session with a CBT practitioner. It reduced my anxiety levels from clinically high down to non clinical low levels, so I'm sure this has continued to help me too.