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PLEASE HELP DIAGNOSE ME.? HELP!

28 replies

StrictlyJiving · 01/10/2016 13:33

I've had an awful aching shoulder for years, since I was 35 actually, now 47. It usually starts with a tingling then starts to ache, eventually resulting in a headache with feelings of nausea.

It started when I was breast feeding. I don't think I've got frozen shoulder, I don't have problems raising my arm or undoing my bra strap or any other frozen shoulder test.

Pain killers don't touch it, but a hot wheat bag brings great relieve, however I need a hot bag everyday all these years so you can imagine this has not been easy nor always practicable.

I've been to the doctors and explained everything. I've been refers to rheumatology, nothing came back, couldn't find anything wrong, referred on to neurology, still nothing and now discharged. I've had 6 weeks of Pilates, useless. I've been doing my own home exercise for 2 hrs now with greatly improved fitness, but not in my shoulder.

So here I am feeling sick with the aching/tingling/feeling of shoulder muscle tightening up and wheat bag. It's ruling my life and all the various GPs I've seen have said, 'just use off the counter pain killers". I start screaming at DC once the aching starts or if DS snuggles up with head on my shoulder, the aching makes me irrational.

Can anyone relate to this at all?

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Backingvocals · 01/10/2016 13:38

Could it be referred pain from a dodgy gallbladder? That can flare up post pregnancy, and shoulder pain is one of the places you'd feel it, weirdly.

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StrictlyJiving · 01/10/2016 13:43

Gall bladder? Never thought of that. Could a gall bladder cause an aching shoulder? I don't have problems in my stomach that I'm aware of.Hmm

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Coldhandscoldheart · 01/10/2016 13:48

Yes. Which shoulder is it that gives you pain? Always the same one?

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Secretspillernamechange · 01/10/2016 13:48

I don't suppose you are hypermobile?

If a wheat bag helps that suggests it's muscular, if you can afford it I would book an appointment with a good private physio - they should be able to identify which muscles are the issue (there are an awful lot in your rotator cuff etc) and then give specific rehabilitative exercises.

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StrictlyJiving · 01/10/2016 13:53

Coldhands it's the right shoulder and always has been this side.

Secretpiller Not sure what hyper mobile is but guessing it's something to do with extreme movement? I'm not aware of any weird movement of my arm. All was fine until I started breastfeeding. It started when looking down at DS when feeding.

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Backingvocals · 01/10/2016 14:00

I think it's the breastfeeding clue plus the feelings of nausea that make me wonder.

Shoulder pain is actually a common symptom of gallbladder problems. I had no idea I had a gallbladder problem until DD arrived. I didn't particularly have any stomach problems - just this excruciating pain. In my case it wasn't in the shoulder but around my ribs. To be fair, I also fitted quite well within the "Five Fs" test for gallbladder problems: fair (meaning Caucasian), female (well, yes), fertile (have been pregnant), forty (39 at the time actually Grin) and fat (sadly, yes).

If it's a possibility for you I would request further investigation. I didn't actually have any gallstones - just a bunged up, sludgy gallbladder with lots of adhesions apparently. But as I mentioned, no symptoms other than the sudden pain.

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Backingvocals · 01/10/2016 14:01

BTW, obviously those tests are not definitive. My Dad had gallbladder trouble and is obviously not female and has not been pg Grin

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StrictlyJiving · 01/10/2016 14:02

The nausea usually starts when the blinding headache starts to come on, I had thought that was related to migraine as a result of the shoulder/neck ache.

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RockinHippy · 01/10/2016 14:03

Google "The Beighton Score" if you can do the moves you see on a chart, then you are hypermobile - though the Rheumatologist should have picked up on this, but from experience I know not all are as knowledgeable as they should be with JHMS/EDSH


Did they do an MRI?

Did they check your B12 levels ?


I have the same problem & mine is a cervical disc problem (C8) caused by long term undiagnosed Pernicious anaemia - starting after child birth could fit here as the Gas & Air used in childbirth depletes B12, as does pregnancy & breastfeeding

If you are not vegan though, don't take supplements as they wont help, but will skew any test results. If you are vegan, then a high dose of Jarrows Sublingual B12 taken with folic acid might help

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Badgoushk · 01/10/2016 14:04

I was going to suggest gallbladder too.

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MissMargie · 01/10/2016 14:05

I will get slated on here but ....... how did your breast feeding go. You don't say how long ago this was - have you hidden feelings about the way your life changed with the arrival of baby.

I certainly had hidden resentment once a DM, didn't admit it but your life is not your own once you have a child. Could this cause tensions/ posture changes which might contribute to this.
Counselling would be one way to investigate this.

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Coldhandscoldheart · 01/10/2016 14:22

Okay, right shoulder, definitely go back & ask for investigations of gall bladder. Are you white & on the overweight side?
The medical shorthand for propensity to gall bladder probs is the four 'f's
Female, fertile, fair & fat. Hang on, five - forty (ish) as well.
It's not definitive at all, and you can certainly be thin with gallbladder probs. Go back & ask :)

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RockinHippy · 01/10/2016 14:48

Gallbladder disease/stones wouldn't explain the headaches though would it Confused

FTR I also have Gallbladder trouble, which started in my 30s & I was under, not overweight, so I only tick 2 of those boxes - DH has it too & only ticks one, so I'm not sure how accurate that is

The similar sounding shoulder pain I get, comes with migraine like headaches, nausea etc etc & is referred pain from a pinched C8 cervical disc. I also have hypermobile EDS & PA, both of which are linked - I do get shoulder pain from my gall bladder, but to me, its a different type of pain

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StrictlyJiving · 01/10/2016 15:24

Rockinghippy I can't do any of the movements on the Beighton score. My right side is generally stiffer than my left but can't do any of those movements on either side.

They didn't do an MRI as they didn't think they was any need, just hot towel and painkillers in their opinion.

They did the B12 check but I've always been anemic even pre kids, they've never been able to find why despite over 50 blood test d supplements don't seem to help. But I seem to function well on my anemic state.

I'm not vegan.

Miss Margies breast feeding was awful, mastitis twice and I managed 5 weeks, but DS switched to bottle fed. No hidden feelings of resentment, adored my little baby and still do Grin. Life did change but for the better.Smile

Coldhand I'm black but fair Wink I'm not fat (at least I don't think so) 9 and half stone, 5ft 2 and the aching started when I was 35 (when I had DS) I'm now 47.

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RockinHippy · 01/10/2016 16:58

Thats good, you don't have EDSH/JHMS then


With anaemia as an issue for you too though, then I'm guessing B12 deficiency/PA is a likely cause as anaemia can be another sign if it.

Theres a lot of controversy around the NHS tests as they are known to be unreliable, even NICE guidelines back this up, but too many GPs & even consultants don't understand the test results properly. Also there is no national "normal" serum B12 level, getting an easy diagnosis is a bit of a postcode lottery. We had this problem, mine & DDs serum B12 was in range here (mine was out of range if I lived elsewhere) yet finally getting through to DDs doctors & getting them to try B12 injections actually improved her health in do many ways almost instantly, this included curing chronic headaches, chronic pain, insomnia, shoulder pain & even got her out of a wheelchair & walking again after 18 months of test after test & no answers - her B12 was well in range

This Site Has More Info


As for an MRI, I would suggest telling your GP that you think your problem might be coming from your spine in tge neck area & ask for a referral to your local Spine Clinic, these are usually pretty quick to come through & I found them far more help than either GP or Neurologist etc - they organised my MRI scan, which showed up both lumbar & cervical disc compression. They can also offer specific physio & even acupuncture. As for what helps, bar the B12 injections, we see a chiropractor & that helps a lot.

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Coldhandscoldheart · 01/10/2016 19:46

Yes, as I say, it's really just a mnemonic of trends, certainly not true of everyone with gallbladder problems Grin In addition I suspect it's pretty old.
It's also possible to have more than one thing going on, or alternatively, you get the pain & nausea this causes tension, brings on headache.
Frankly though, what you're describing, whatever it's cause, warrants further investigation.
What this thread has done is given you a couple of ideas to go back to the GP with. And you should :)

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StrictlyJiving · 01/10/2016 21:02

Thank you all so much. Yes this thread has definitely given me a lot of ideas to think over, I'll definitely look at the gall bladder angle and B12 deficiency.

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RockinHippy · 01/10/2016 21:46

Good luck Stictly I hope you find an answer & some help too

& you are right Cold it could be more than one thing - I seem to remember that stomach acid problems caused by gallbladder disease/stones can make B12 difficult to digest properly too. I have both & I've seen it discussed a few times on the B12 groups.

I was surprised by the 4 Fs thing, I hadn't heard of it before seeing it mentioned here - wish I had known about it, my poor DM spent the last years of her life with undiagnosed gallstones & fearing it was her heart, so would never listen when I suggested gallstones & it was only diagnosed because behind her back I insisted the hospital check when she was in. She ticked all 4 boxes when it started for her

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MigGril · 01/10/2016 21:58

What type of neurologist did you see?

I ask because you could easily be describing chronic migraine. The shoulder pain is a system of the migraine abs is very common. It's also common for women to start with migraines after having children due to the changes in hormones.

A migraine specialist (not just a standard neurologist) would be able to assess you properly and determine if that's what it is or if it's something else that needs further investigation. Taking a preventative medication may then help.

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RockinHippy · 01/10/2016 23:25

Thats very interesting Mcgil I saw a migraine specialist too & I've never heard of the shoulder pain as linked to my own chronic migraine diagnosis, but I know it can cause all sorts of weird & wonderful symptoms, so it doesn't surprise me, my face would go numb for example

Thankfully its turned out to be anothrt symptom of B12 deficiency for me too, along with other headache types & its much better since starting on the B12 injections. DD migraine has stopped with B12, which I am so pleased about

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MigGril · 02/10/2016 12:31

I mentioned it as I get pain in my neck should and arm linked to my migraines. The arm and hand was new last year and I had a review by a neurologist to make sure it was nothing else sinister, but no is just all linked to my migraines. It's amazing what they can cause.

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StrictlyJiving · 02/10/2016 14:38

Will the B12 deficiency be spotted in a normal blood test for anaemia? So I know what to say when I visit the GP.

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RockinHippy · 02/10/2016 23:30

No Strictly you need a special test, the main one they do is a "serum B12 test" though this isn't the best, so get your results & have a look on the site I linked to earlier. An active B12 test is more accurate, though still not 100%, but worth pushing for if your serum B12 is under 500 & you are sure you aren't taking any supplements with it in

Other tests that are needed are if you can get them are...

Folate (its linked & deficiency has the same symptoms)
Ferritin (iron stores, also linked)
MMA - though not useful if you have any kidney trouble
Homocysteine (toxins that build up in blood due to lack of B12)
Parietal Cell Antibodies
Intrinsic Factor


HTH

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Hawkmoth · 02/10/2016 23:36

I get arm migraines as you describe. I've had every sort, the arm ones are among my preferred type. My mum is the same but she got arm migraines more often than any other sort (my usual are hemiplegic). Have you tried a Triptan?

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Helpisathand13 · 02/10/2016 23:40

Just to throw something else in the mix. If the shoulder pain started when breast feeding it could have been caused by the angle you positioned yourself and be muscular, tissue damage etc esp if causing headaches and tingling. Another suggestion might be to see a really good physio, they can be hard to find, but try. I have had similar issues in my upper body but because I have an auto immune condition a lot gets lumped into that. However, a really great physio realigned my back, improved my posture and found my shoulder joint and ribs were dislocating ever so slightly and would manipulate them back into place. This together with the posture help did my upper body pain and headaches the world of good. If I feel it return I know what works to resolve it. Just a thought. I do hope you get to the bottom of it and you feel better soon. Great advice here. Much love x

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