Do these symptoms sound familiar?

[KittyB52]

I have posted in General Health and was directed to this forum for further advice.

I suffer with lower back pain which is worse in the morning and if I am too active first thing - pains in hips and upper thigh but not like sciatic pain. I also suffer from plantar fasciitis. I have recently (last couple of months) developed sore/weak hands - can barely make a fist first thing and left hand is swollen so I need to remove my wedding ring. I also wake several times as I get uncomfortable with various sore spots on joints.

Other symptoms include:

• clicky ankles
  
• Left shoulder pain (can't sleep on left side any more, although I often wake on that side)
  
• Stiff back muscles
  
• Stiff/painful neck muscles
  
• Painful spot on hips
  
• Light-headedness
  
• Clumsiness - I often wobble off balance a little as I am walking about
  
• IBS - mild constipation, not severe enough for me to require any medication
  
• despite going to bed early, I never feel like I've had a decent night's sleep
  
• History of infertility due to hormonal imbalance and immune issues
  
• Occasional vision disturbance/blurry eyes (thought this might be visual migraine)
  
• Occasional lapses in concentration, unable to focus on one thing, forgetful
  

I need to go back to GP (didn’t realise what a list that was until I wrote it all down) but have no clue what tests I should be asking for. I have had hormonal tests as I suspected I was perimenopausal (I am 44), but GP said levels were ,normal’. Vitamin D is low and I am going to increase supplement of that. I was tested for rheumatoid arthritis, and that was also ‘normal’. I saw an osteopath for my back and he said I ‘fit the profile’ for fibromyalgia.

Does these symptoms sound familiar? What should I be asking GP to do next?

Thanks in advance and sorry for the epic post.

[KittyB52]

Hi Maniacmum. I have looked at the symptoms of AS before, but dismissed it in my head. However, that site makes it sound like a possibility.

I am noticing more sensitivity to touch (DD’s foot brushing my knee is painful). I haven’t noticed swollen joints, although my hands feel swollen first thing in the morning (my GP was a bit when I said that.

The last couple of colds I’ve had have turned into chest infections (although I do have asthma).

Thanks for your post.

[KittyB52]

I’ve been looking into vitamin D and B12 deficiencies through groups on Facebook. I have been back to my GP to ask for further testing around B12 deficiency but he pretty much shot that down as my level was in the normal range. He did agree to restesting and also tested a few other things. I got the results back and weirdly, my B12 level was up a bit, without me taking any supplements. Still low, it was around 350 I think.

I have to have the tests done again in a month as some of the blood count results were ‘borderline’. According to some very knowledgeable people in the Facebook groups, I could be anaemic, but it could be linked to the low B12.

However, I don’t think I am going to get anywhere with my GP. Starting to think a referral to a haematologist might be a better bet, but little chance of that.

[MovingAgainOhWhy]

I can completely relate to this, sometimes it feels you get to a dead end with your GP. I am seeing a different one for my next appointment and he is lovely, I think switching can help.

Sometimes when you have complex chronic symptoms, the symptoms sound tangled and non-specific so a fresh pair of ears are really useful

[KittyB52]

Hi Moving, my GP is the ‘best’ at our surgery but I am now wondering if one of the others might be worth a try. I am a little reluctant to switch surgeries as the nurses at the practice are lovely and they adore DD. So many GPs seem to be unaware of B12 deficiency and its effects that I could be switching for nothing.

[shouldwestayorshouldwego]

Along similar lines to Foobarjar it sounds similar to EDS. Some people are not hypermobile with it. It is also genetic with different variants, plus different people within the same family can be affected differently. One person might just be very flexible but no medical issues, another might have hernias, someone else might have loads of dislocations, over-crowded teeth etc. Not saying it is that but lack of flexibility per se does not rule it out. Consider whether anyone else in your family has other symptoms. Hope you find your answer soon.

[KittyB52]

Back again - blood test results back and similar to previous month's. GP has requested them to be done again, as they are borderline, but has requested a FBC and liver function test again.

I am trying not to Google things, but the results I have (high platelets and ESR, low mean cell volume and eosinophils) seem to indicate some kind of inflammation (although I tested negative for RA and Coeliac disease) or anaemia.

Not sure at what point GP will stop requesting blood tests and refer me to someone else...

[KittyB52]

Another update. I found some more information on B12 deficiency and it did sound very similar to the symptoms I have. I wrote out a letter to my GP, asking him to look at some research into treating people with symptoms of B12D even if their test results appear 'normal'. I also requested some further testing. To my surprise it worked, and he sent me for some tests. One result has come back normal (although this doesn't rule out B12D, apparently) and the other sample got lost in transit.

However, my folate levels are quite low, and looking at results, I could well be anaemic. So I am waiting to hear back from GP about next steps.

My back pain is much better and I am more mobile, although most of the other symptoms are much the same.

[Misty9]

I applaud your persistence with your gp kitty as I find it really hard to challenge/request things with mine. I also have a list of chronic symptoms and am despairing of getting any answers.

Strange question But have you ever been bitten by a tick or could have been? I'm currently being treated for suspected Lyme disease and the untreated late Lyme disease fits a lot of my symptoms. Might be worth adding it to the list and it's often diagnosed as ME/CFT too.

Good luck on your quest. My latest referral is to endocrinology.

[Misty9]

I should say I'm being treated for acute Lyme disease following a bite and subsequent bullseye rash. The gp's eyebrows disappeared into her hairline when I mentioned late Lyme as lots totally explaining my chronic symptoms though she did order the blood test to shut me up

[Misty9]

Lots totally = potentially...

[SassitudeandSparkle]

Only read this today and I see that on the first page someone mentioned polymyalgia (rheumatica) which my mum had, and her symptoms sounded very similar to yours especially the sore neck/shoulders first thing in the morning.

Good to hear that your back pain has improved - it is so exhausting living with pain, takes a lot out of you.

[KittyB52]

Hi Misty, no, I don’t think I have been bitten - at least, I have not noticed any bite or unusual rash.

I have received the last of the B12 deficiency test results, which was also ‘normal’. So I am now wondering what to do next - test results show I could be anaemic, so maybe I should treat that first and see if anything else improves? Although having been on the excellent B12 and PA Facebook group, I know lots of the vitamins are linked together so am a bit wary about suddenly starting iron supplements (for example).

I still think there is something inflammatory going on somewhere too - platelets are slightly raised and I still get joint stiffness. I don’t know if that could be a perimenopausal thing though.

[Sweetandkind]

Do you have your thyroid results? These can often be 'normal range' but highish tsh with low ft4 can indicate thyroid issues - odten overlooked by Dr

[MissSmiley]

It could still be coeliac disease
I would have the gene test done privately for speed (around £100) and if positive push for biopsy

[KittyB52]

sweetandkind The thyroid test result was Serum TSH level 2.3 mu/L [0.2 - 6.0].

Misssmiley I don’t have the money for private tests at the moment. Did your GP refer you for the biopsy or was that done privately too?

[Sweetandkind]

Have you only had tsh tested? Not ft4? I think a full thyroid finger prick test is around £50. Having your ft4 and ft3 plus antibodies tested would be much more thorough...Gp should at least do ft4 and antibodies though really.

[KittyB52]

Sweetandkind, yes, that’s the only thyroid test I have had done. Which antibodies do I need testing for?

[Sweetandkind]

TSH is totally inadequate to test thyroid function.
Not sure what the 2 antibody tests are but you could look here www.thyroiduk.org.uk/tuk/about_the_thyroid/hashimotos.html

[KittyB52]

The letter about my B12 results said I could go back to GP to discuss my symptoms so I will do that and ask about the thyroid testing (also want my iron and folate levels checking again). If he won’t do the tests (for whatever reason), I will try to get the finger prick test done. Just looked at the symsptoms of underactive thryoid and that could be another possibility.

So many conditions with overlapping symptoms.

[KittyB52]

Well, I have had blood tests for all sorts (except in depth thyroid tests, just TSH done again), and nothing new appeared. The weird kidney test thing has flagged up again, and my blood test results are ‘satisfactory’ although a bit of reading around points to possible anaemia.

The antibodies test is called ANA Screen(EliA CTD) CTD screen - anyway, it was negative.

The dreaded ‘fibromyalagia’ was mentioned when I last saw my GP, so will be interested to see what the review appointment brings.

[KittyB52]

Just reading up on the antibodies test, as I started reading about lupus symptoms and thought it might be a possibility. However, the antibodies test included lupus, Sjögren’s syndrome, rheumatoid arthritis, scleroderma and ‘connective tissue disease’. All negative.

I know it’s possible to have negative blood tests but still have a particular condition, but that’s quite rare, isn’t it?

[WhirlyGigWhirlyGig]

Its not that rare no, it depends if the disease is active. I have PsA and that's hard to diagnose because if it's the tendons that are inflamed then they don't tend to show up with bloods but if you do an ultrasound scan, they glow up like a good'un.

[KittyB52]

My GP has admitted defeat and is referring me to a rheumatolgist. He said all my blood tests results were ‘normal’ (B12, iron and folate all quite low) so he clearly wasn’t going to do anything else. Let’s hope the rheumatologist can do something.

[endofthelinefinally]

I have autoimmune disease but my antibody tests are usually negative - I think I may have had one positive result.
My consultant says she thinks that we just don't know/ have all the tests at the moment.
My symptoms were complicated by extremely low Vitamin D levels. Almost everyone in the UK is deficient in vitamin D to some degree so if you haven't been tested you should be. I take supplements and have my levels checked regularly.
I am on long term prednisilone. The trouble with AI conditions is that they tend to travel in packs. Many people have more than one. Also symptoms fluctuate. Trying to sort it sll out is like nailing jelly to a wall.
My doctor is just trying different treatments and I keep a diary. It is all a bit hit and miss.

[KittyB52]

A diary is a good idea. I have a couple of new(ish) symptoms to add to the list - hair loss and food cravings. The food cravings is really odd, as I am a vegetarian and when I have been cooking for DD (who is not veggie), I have struggled to stop myself grabbing a mouthful of salmon or chicken.

Vitamin D levels were low but are highter at the moment after the weeks of sunshine.