Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Original poster

Chronic pain syndrome?

35 replies

icclemunchy · 27/08/2015 21:42

Anyone else suffer from his? After nearly two years of pain and fighting to get refered to someone who could help a rheumatologist has said today that she thinks I just have a chronic pain syndrome and there's nothing she can do for me. I've been discharged with a referral to the pain clinic. Is this it? I'm 28 and can't even do my own housework, my partner and kids are suffering and quite frankly it bloody sucks.

Where do I even go from here? I've seen the pain team before, they just gave me lots of painkillers and whilst it eased the pain aspect slightly I have so many other symptoms which no one seems interested in. My GP is no use and just keeps telling me I. Depressed. I'm fed up but not depressed!!

Any even vague insite (or maybe just a quick up the butt) would be amazing

OP posts:
MatildaTheCat · 27/08/2015 21:45

So no diagnosis? Where is your pain?

FlumptyDumpty · 27/08/2015 21:55

I had chronic back pain for years, tried physio, osteopathy, various painkilling meds and nothing worked. I was in complete despair until I tried acupuncture as a last resort. After weekly sessions over about three months I no longer have the chronic pain Grin. Are you in a position to try it?

Iamaslummymummy · 27/08/2015 22:02

Did s they say complex regional pain syndrome? Or just chronic pain syndrome

Original poster
icclemunchy · 27/08/2015 22:19

She literally just said a chronic pain syndrome. Tbh I was a bit shell shocked as I was expecting to be told this is what's wrong do this and you'll get better Sad I can list my symptoms if we this that would help?

OP posts:
Toughasoldboots · 27/08/2015 22:27

This reply has been deleted

Message withdrawn at poster's request.

Iamaslummymummy · 27/08/2015 22:28

List them. There's bound to be someone who can help on here

Original poster
icclemunchy · 27/08/2015 22:46

It's a long list!

Upper back pain
Lower back pain
Sciatica
Pain across the backs of shoulders
Join pain and stiffness (mainly shoulders, elbows,wrists and knees but can be any)
Neck pain
Short term memory loss
Confusion/foggy ess (I can't read books anymore because I can't follow the plot and often ant find the word mid sentence)
Mood swings
Dry painful eyes
Fatigue (I could sleep 22hours a day without trying but never feel less tired)
Restless / broken sleep even bough exhausted
Burning pain (bit like when you have the flu, mainly in legs but can be anywhere)
Short tempered win noise/bustle
Clumsiness
Recurrent sinus infections
Painful hair
Feeling of muscle weakness
My knees won't lock when painful

I don't have all of them all the time but have suffered them all within the last few weeks, the pain is constant and worse if I try and do to much, the fatigue is much worse if I do too much and for a few days afterwards

OP posts:
RandomMess · 27/08/2015 22:49

If it's complex regional pain syndrome the treatment is exercise - takes a long time and you need pain management to get through it.

RandomMess · 27/08/2015 22:50

OP - did they rule out psoriatic arthritis??? Bloods will test negative for RA but the symptoms very very similar. Usually there will be someone in your family who has psoriasis.

Iamaslummymummy · 27/08/2015 22:51

Ehlers-Danlos syndrome?

Iamaslummymummy · 27/08/2015 22:52

Me/cfs or fibro myalgia

Original poster
icclemunchy · 27/08/2015 23:10

Bloods al normal apart from boarder line liver? Ivejust had more bloods to look at that and in having a scan.

No one with psoriasis as far as I know and she did ask about that.

My mum has both cfs and fibro and my aunt has fibro. Dr knows about both bt didn't mention it with regards to be, although I didnforget to ask outright if that's what I have, I've been discharged now aswel :(

OP posts:
Original poster
icclemunchy · 27/08/2015 23:13

Oh I forgot Im also type 1 diabetic although that's well controlled and I've had it 10years..

These symptoms have been going on around 2 since I fell down the stairs

OP posts:
PacificDogwood · 27/08/2015 23:16

IME you will have to find a way to manage your symptoms including pain, rather than pursue a diagnosis or cure. Naming your condition won't necessarily help you feel better and that's what I would focus on.

Graded exercise, psychological therapies and antidepressant/antiepileptic medication can help. ADs and anti epileptics are used very successfully for chronic pain in the absence of depression or epilepsy IYKWIM.

Have you ever had any specialist pain physio/psychology input?

stillsingingintherain · 27/08/2015 23:21

I also thought Ehlers-Danlos sydrome. My friend had her symptoms fobbed off for years but has finally got a diagnosis of this in the last month. It was a shock to be diagnosed with something that is life long and often progressive, but a relief to put a name to it so she can now access the right medical care and support. You should push for another referral..

Original poster
icclemunchy · 28/08/2015 00:00

Where would I look to be referee too though? I've seen ortho, rheumatology and neurology so far as wel as one pain team.

It's not so much Pacific as knowing that this is it or what I can expect iyswim.mi just feel in limbo at the moment am I going to get worse? Or better? Or stay the same but manage whatever this is better?

I've not seen a physio in ages as the last one wasn't keen to give me anymore than basic stretches without a diagnosis. Half the problem is I'm not sure what I should ask for or who to ask for it!

OP posts:
Pleasemrstweedie · 28/08/2015 10:01

Sorry to hear you've been fobbed off.

I don't know how many of these blood tests you will have had as part of the diagnostic process, but you could do with having thyroid, vitamin B12, folate, vitamin D, ferritin and iron checking as if any of these are not optimal they could give symptoms like you are experiencing.

I am particularly concerned about the intolerance to noise you mention, which suggests a level of adrenal fatigue. Have you had your serum cortisol checked?

Original poster
icclemunchy · 28/08/2015 10:33

All hen it's lot checked and within normal levels, I also take a multivitamin with iron and a fit D supplement (I'm breastfeeding so gp gave me one she said was higher dose?)

Not sure about serum cortisol, will ask my dr

OP posts:
Original poster
icclemunchy · 28/08/2015 11:09

Was Ment to say all the first lot has been checked! Sorry I'm very wooly today!

OP posts:
PacificDogwood · 28/08/2015 16:54

icclemunchy, sorry to hear today is a bad day for you.

Wrt 'knowing what to expect': I know what you mean, but nobody will be able to tell you that, even if you had a diagnosis. Whether is fibromyaliga, or ED, or something else altogether, all even the cleverest expert can tell you is how the course of the illness may affect a cohort of people. Nobody can ever predict how an individual is going to fare and at the end of the day, what you want to know (understandably) is how you are going to be. Nobody, at least nobody who is honest and competent, can make that prediction.

Reading your posts, what strikes me is that you very clearly don't feel that you were well looked after or listened to. There are many medically unexplained problems that after thorough investigation still don't lead to a neat diagnosis and what matters then is how the person affected can manage their condition. Resilient people with a good team around them, be that HCPs or family and friends, tend to end up with a better quality of life than those who falter and despair at the difficulties that they face.
I have no idea what makes one person so capable in the face of horrible adversity, when others collapse in a heap Confused.

I hope you find the support you need. IME a pain clinic can be a font of information and help - main problem here is that they are under-resourced and waiting times are very long.

Thanks
Original poster
icclemunchy · 28/08/2015 19:56

I do feel a bit fobbed off tbh, ibe seen one ortho team who said there was nothing wrong with me but then stated I had disk degeration at a follow up. Been refered to the wrong nuro team (one that does bran surgery not spinal!) see a pain clinic who refused to see me when I was pregnant because "pregnant women don't get pain" Hmm

I'm not even sure what I've been tested for and what I haven't! I lost my job because of this 18monyhs ago and we've been struggling on one wage since, so now I have to try and claim pip but not sure if I can because I don't have a firm diagnosis and the letters I have from various clinics never seem to a knowing how hard it is just existing (they say things like patient complains of feeling tired or experiences some joint stiffness in the mornings - not can sleep 22hours a day and can't get out of bed in the morning!)

OP posts:
Original poster
icclemunchy · 28/08/2015 19:57

Sorry that turned into a right rant, just feeling very down about it all today

OP posts:
flapinko · 28/08/2015 23:28

icclemunchy, my DH has had chronic unexplained pain all over his body, specifically his joints, along with lots of other weird symptoms like vertigo and tiredness/restlessness - which was all kicked off (seemingly) by some major back surgery he had a couple of years ago. All his tests were clear. No explanation at all and GP was no help. In desperation, he tried going gluten-free (unusual, as he is a real 'bloke' and not in to food fads etc.) but the change in him since has been literally astonishing. He is a new man. The effect was pretty immediate - I think by day 3 or 4 he said he felt completely different, not just physically but mentally too, like a 'fog' had lifted. Now 3-4 months or so on, he is doing press-ups every night, he can ride a bike again, he can do long walks without totally ruining himself, he can lift the kids up.

I don't profess to know the science behind it, but do feel compelled to tell anyone suffering with unexplained chronic pain, to at least try it, as it has been nothing short of miraculous for him!

MajesticWhine · 28/08/2015 23:42

I have chronic myofascial pain (it is nothing like as bad as what you are experiencing) and I was referred to a pain clinic recently. Seeing a pain specialist is not the end of hope. In my experience, they will really try to help you and get you on the right medication. They will have seen lots of people with a similar array of symptoms, and they will know what helps. Also, although you know it's not "all in your mind", don't turn down psychological help. Because it might just help. Once you have chronic pain, the psychological side of it can really kick in and make it difficult to get better.

Original poster
icclemunchy · 29/08/2015 00:08

That's interesting flapinko I was actually tested for celioacs (sp?) as a child but the tests were inconclusive I've never had any symptoms so it was decided it was just one of those things.

I think I'm going to ask the GP about some councilling or something. Accepting that at 28 this might be as good as it gets is really shitty Sad it's really unfair on the kids aswel. I've already had to arrange for my 7months to go to a cm 3 days a week because I just can't play with her or anything now she's starting to be more mobile.

It feels like I'm having to give up everything that made me me. I've got two horses who I'm going to face up to rehoming, I've been putting it off hoping I'd have some magic cure but I can't justify the cost of keeping them for someone else to look after them Sad

OP posts: