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Chronic pain and learning to live with it

(21 Posts)
ThatIsNachoCheese Sat 25-Mar-17 13:43:03

I fell down the stairs 3.5 years ago which results in a damaged coccyx (which was finally diagnosed after 1 year of extreme pain).
The pain got slightly better after a steroid injection and I eventually made the difficult decision to have my coccyx removed.
That was almost a year ago and my pain in my coccyx area is still awful and has now spread and my entire back, shoulders, neck, hips, pelvis, jaw and even my feet.
I am beside myself with pain at the end of the day after working full time. I'm on tramadol, ibuprofen, paracetamol and I'm just starting gabapentin.
I'm seeing my GP on Monday, I want to ask about fibromyalgia which I know can start after an injury.
There doesn't seem to be a reason that my pain is everywhere and so bad. I'm feeling so down about it today, I have no life other than going to work, I can't sit in the car for very long, I can't sit to go out for dinner, I feel like I have no life.
I don't even know what I am asking sad does anyone with fibromyalgia think that it sounds like I have it? I've had blood tests which don't show inflammation or anything out of sorts, but something is clearly wrong for me to be in so much pain.

ThatIsNachoCheese Sat 25-Mar-17 18:17:12

Gentle bump

ipswichwitch Sat 25-Mar-17 19:10:16

Ask for a rheumatology referral. My fibro was diagnosed by one - she pressed certain points across my spine and pelvis gently but it really hurt me. Along with all my symptoms (pain all over, fatigue, etc), she said it was fibromyalgia.

I now take amitriptyline to help with the sleep (apparently most fibro sufferers don't get very good deep sleep), and good pain relief. Hopefully you'll get some answers on Monday.

smilingsarahb Sat 25-Mar-17 19:20:09

I was going to say amitriptyline too. It's also an antidepressant so it helps you sleep, makes things hurt less and if you have any depression from the horrible injury and pain it might help a bit too. I had it for pain relief bit the other affects were good too

ThatIsNachoCheese Sat 25-Mar-17 19:24:55

Thank you both. I have just stopped taking amitriptiline as it wasn't helping with the pain. It definitely helped with sleep though. My gp said I shouldn't take it with gabapentin so I will check that with my new gp on Monday, and will also ask for a referral to rheumatology.
Thank you both

smilingsarahb Sat 25-Mar-17 19:32:12

Good luck with a referral. Chronic pain is awful. I had an injury that ruled my life for a very long time and my heart goes out to you. Time was a great healer but it was 5 years of time. I also had some proper physio massage (not just exercises) and a chiropractor which thankfully my medical insurance paid for. The massage helped a lot as some of the pain was muscle tension from other muscles than the area of injury. I was scrunching everything up to cope with the pain and caused more aches

nothruroad Sat 25-Mar-17 19:32:48

Please push for a rheumatology referral. They will be able to investigate and hopefully provide better pain relief. You should not have to live like this with no diagnosis. All the best.

wowbutter Sat 25-Mar-17 19:40:33

Duloxetine or pregabilin work well for pain. And sleep.

I also have chronic pain, as a result of an injury in 2012

ThatIsNachoCheese Sat 25-Mar-17 19:45:00

Thank you, so sorry to those of you also dealing with chronic pain.
I currently spend almost £200 a month have 1:1 pilates and myofacial release therapy massage, but those appointments and work are all I leave the house for, I have no life sad

icclemunchy Sat 25-Mar-17 19:49:58

I have fibro. Caused by a fall down the stairs nearly 4 yrs ago. I take gabapentin but don't fine it helps (not did amitriptiline) I think I'm trying pregabilin next. Ask for the rheumatology referral but also the pain clinic if you've not been seen yet.

Hugs for you too because chronic pain Is shit to live with flowers

bibbetybobbetybooo Sat 25-Mar-17 20:04:19

Gentle hugs for everyone. I'm currently experiencing an absolutely horrendous flare-up which is making my hands/wrists/arms feel like lead.
Living with this kind of pain is awful. People who haven't experienced it really don't have a clue xxx

user1471453601 Sat 25-Mar-17 20:05:01

I'm so sorry that you find yourself in this position.

I've had constant pain since having part of my lung removed (and part of three ribs to facilitate the lung removal). That was six years ago.

Through trial and error, I've found things that make the pain worse (in my case, standing still, sitting in a chair that doesn't support my upper back), and while I try to avoid them, sometimes they are unavoidable.

No amount of pain killers help. No amitriptyline, codeine, paracetamol. Nothing. After six years I've learned to accommodate the pain. It's my constant companion, but I've come to the understanding that there I can do things to help. I don't get on any form of public transport when I can see I cannot sit, I avoid places that don't have seats that support my back (don't get me started on the seats in hospitals etc).
Swimming has helped a tremendous amount, has as yoga.

Good luck in finding your way

Honeyandfizz Sat 25-Mar-17 20:05:54

What about referral to a pain clinic?

pukkapine Sat 25-Mar-17 20:11:34

Another fibro sufferer here...

I would second the pain clinic referral. If nothing else they can take a better view of your meds. I also was diagnosed by rheumatology by the specific pain points (plus other symptoms) after years of misdiagnosis. This is quite 'usual'. Fatigue is the big whammy that goes with the pain.

Amitriptyline has really changed my life, so it's a shame that didn't help. I have gradually ranked up to a high dose, and the pain never goes, but it is manageable with this. But it is awful, and every day is like trudging through treacle. People don't realise how much effort it takes just to keep going, but you do, and you will.

I hope you can get a good management plan in place. It really changes you, and is hard, so the other thing I would recommend is some therapy - just to offload and realise that actually, just keeping going makes you a hero.

ThatIsNachoCheese Sat 25-Mar-17 20:17:46

Thank you all so much, I really appreciate you all replying and I'm so sorry you all have chronic pain too.
I will push for a referral to rheumatology and also pain clinic (I don't know why this hasn't happened up to now).
Thank you all flowers

ThatIsNachoCheese Mon 27-Mar-17 20:06:38

I saw my lovely new GP today who did the pressure points and and is going to do some blood tests to check for anything else.
She agrees I may have fibromyalgia and actually brought it up before I did. I cried all over her I'm afraid because I'm just so sick of it.
I left feeling like she'd really heard me and we are finally getting somewhere

Blossomdeary Mon 27-Mar-17 20:15:43

It is tough - I am in the same boat after a fall from a boat onto a concrete set of steps - 3 years ago. One fracture was diagnosed, another missed until it was too late to remedy - so this it it folks! It is possible to get sick of this sort of pain.

I do hope that you get some help.

ThatIsNachoCheese Mon 27-Mar-17 20:34:24

Oh you poor thing. What did you fracture? So sorry you're also in pain sad

ThatIsNachoCheese Wed 05-Apr-17 10:47:06

Hi all
I went back to my GP today who said my blood tests were OK, they just showed mild inflammation. I asked if this meant I have fibromyalgia and she said, yes she thinks I do.
She is going to check to see if she thinks it's necessary to refer me to rheumatology (sorry, I'm sure that's spelt wrong!) to see if they can help. She said she doesn't want to refer if there is no need.
Is this a diagnosis? I'm so confused (and completely exhausted after a shocking nights sleep and awful pain yesterday and today.

Bebraveagain Wed 05-Apr-17 16:22:00

Surely if the GP can't do any more for you, she must do the referral? Otherwise she is holding you back from specialist invention.

ThatIsNachoCheese Wed 05-Apr-17 16:36:19

I think as I'm on so much pain relief and am now trying gabapentin, she wants to see if that helps.
She wants me to try mindfulness, but apart from that says the treatment won't be much different to my back pain treatment. She said she doesn't want think of refer me if there's no need, so wants to check first to see if they'd do anything differently.

She talked about antidepressants but I don't want to take them, I'm miserable due to the pain and fatigue. I honestly can't see how they'd help, and I think I'm taking enough pills as it is!

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