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.

People can be symptomatic of B12 deficiency with levels of 300 or 400. But you’ll get nowhere with the nhs.

Another vote for Coeliac disease

Boo, I posted and it disappeared.

MissWilmottsGhost, that’s partly why I ruled it out for myself. I may go back to the osteopath to find out more if I don’t get anywhere with the GP.
Breakfastat I am pretty sure I have zero core strength as I am quite unfit. I do however like massages, so I might ask for a voucher for one for Christmas.
Labradoodliedoodoo I will look into B12.
Aliceinwanderland I will look into it. I am interested to see what (if anything) comes out of the MRI scan in a couple of weeks.
sayhellotothelittlefella I have some of the symptoms, but not all. I get occasional bloating, but I don’t know if that is linked to any one food. I just did the assessment on the Coeliac UK page and it recommended that I get tested.

Just started look at the symptoms of B12 deficiency - it’s interesting. I have been taking some of the medications which may lead to B12 deficiency - omeprazole or ranitidine for heartburn and ibuprofen for bad back. I am no longer taking either regularly.

KittyB52 I got virtually none of the symptoms of Coeliac disease. Neither did my 3 Coeliac children. None of us ever had bloating. My only symptoms were joint pain and low iron.
Coeliac disease prevents the body absorbing vitamins and other nutrients so this means that it is a multi system disorder and symptoms can vary massively. Some doctors won't consider it as a possibility unless you have the 'typical' symptoms ( in fact one doctor told my son it was unlikely he had CD because of lack of symptoms despite the fact he had a positive blood test - he does have it). I would push for a tTG test - and even then possibly a biopsy as you can get false negatives as a PP mentioned. Reading your OP all of your symptoms fit Coeliac Disease particularly B12 deficiency this is very common amongst Coeliacs - as is low iron and low Calcium. Hope you get some answers soon and start to feel better

I am going to read up on Coeliacs disease a bit more. I think there is something else going on with my back, but Coeliac disease might explain a lot of the other symptoms I have.

I am just going through my test results again - do these indicate anything in particular? Just wondering if anyone recognises a similar pattern in their own test results. I understand that no-one on here can give me medical advice.

Eosinophil count: 0.00 - below low reference limit
Erythrocyte sedimentation rate 10 - above high reference limit
Serum vitamin B12 level: 258
Serum ferritin level: 10.6 (range is 10.0 - 291.0)
Serum calcium level; 2.24
Serum inorganic phosphate level: 1.32
Serum alkaline phosphatase level: 88
AST serum level: 48 - above high reference limit
Serum alanine aminotransferase level: 57 - above high reference limit

MRI scan results are back - my record says simply 'Lumbar Sacral Report, Borderline - Make an appointment to see doctor, Other (routine appt in January)'. I am going to attempt to get to see my GP before then as I am struggling to look after my DD with the back pain so if nothing else, I need some decent painkillers for the short term.

I have had a look at the test results I posted in my previous post and they do seem to be linked to vitamin D and B12 deficiencies, but of course, those could be linked to autoimmune issues. So I need an expert of some description to look at it and piece it together - which I will be asking my GP about.

Any advice on nudging GPs towards referrals would be appreciated.

Not sure what borderline means. Is it to do with bone density ( oesteopaenia) ? Not sure how to nudge GP's for referral - I was very lucky, GP's DF had coeliac disease and we had private insurance which covered us up to diagnosis for chronic illnesses. So seem very quickly. The only thing I can think of is really exaggerate the severity or ask for a second opinion. Maybe ask if there is a doctor specialising in auto immune conditions at the practice. Quite often GP surgerys will have doctors who are responsible for specific medical areas. Hope you get some answers and help with back pain

Sorry too many GP's. Auto-correct didn't read my sentence properly should be plural GPs first

I don’t think there is someone specialising in auto immune conditions at our surgery, but I will ask. I will be pushing for something to help with the back pain as OTC painkillers don’t do much and I am loathe to take NSAIDs as they can cause liver issues (and I did get a weird liver function test result which is so far unexplained).

I am going to do some research with my test results and go with a list to my GP - it helps me remember everything.

Thanks.

I saw my GP this morning. The MRI scan showed very slight degeneration of the discs, but not enough to cause the pain. My GP prescribed another painkiller (Celebrex?) which is supposed to be gentler on the stomach - I will be taking it with Omeprazole as before. I am also being referred for physiotherapy, which could take some time, as there is a waiting list.

I mentioned the possibility of fibromyalgia and coeliacs disease and GP checked to see if I had been tested. I haven’t, so I will have that blood test as soon as I can get to the health centre.

I am also going for some nerve tests to see if there are any trapped nerves in my arms/hands. He mentioned carpal tunnel, but I have swollen, sore hands first thing then they get better throughout the day (when I am active) so not sure about that. Good to rule it out though.

Another quick update - the Coeliac test came back negative. I have joined a few Facebook groups about B12 deficiency and I have an appointment for the nerve tests in the new year. Will keep ruling things out and see what we are left with...

Thank you all for your support so far.

Good news the Coeliac test was negative. Hopefully as things are ruled out the cause will become clear. B12 deficiency can have so many different symptoms that's another avenue that might reveal an answer. The back pain not being commensurate with the level of damage is worrying though. I hope the pain killers are helping more than they were. Keep us posted as to how your doing

Well, I’ve taken the new painkillers for a month now and not noticed a massive difference. I think they have taken the edge off the back pain during the day, as I have run out of them (thought I had two packets) and have been in agony since. They have made no difference to my stiff back and joints first thing in the morning - I can still barely move and have to sit for a good hour to let everything ‘wake up’.

The nerve tests showed nothing wrong with my arms and hands - no sign of carpal tunnel.

So I guess I will be back to the doctor to see what he suggests next. I confess it’s starting to get me down - not being able dress myself in the morning, or look after my daughter until my body has decided to start working (and even then, it’s hard work as everything is so much effort).

Sorry, didn’t mean to whinge.

kitty I had a lot of your symptoms including very bad lower back pain and stiffness that was much worse in the morning. I got to the point where I avoided walking as this worsened things.

I also had an MRI which showed mild disc degeneration but nothing serious enough to explain the level of pain.

My other big symptom was joint pain in my hands especially in the mornings.

The things that have helped are Pilates (been doing it for three years now), HRT (ditto - I was about your age when it all started) and going gluten free. Had loads of tests on my hands which showed up nothing. But three weeks after giving up gluten the hand pain had gone. I’m not coeliac but there’s definitely something going on there.

Just sharing in case any of this helps.

I know you got thyroid levels checked but probably not the full set. Ask your doctor about it and have a read of symptoms for an under active thyroid www.nhs.uk/conditions/underactive-thyroid-hypothyrodism/symptoms/

Backingvocals that’s really interesting. I know I need to exercise, I am hugely unfit, but when you struggle to get yourself dressed in the morning, it doesn’t always encourage you to be active. I do need to lose weight too, so my diet must change.

Sontagsleere thanks for that. Will mention it to the GP when I go next.

I have just been reading somewhere that there’s possibly a link between low B12 levels and omeprazole, which is what I’ve been taking for a few years for heartburn. Joy!

And I already knew about the omeprazole-B12 link as I mentioned it upthread - doh!

Ehlers Danlos syndrome has all of these symptoms. But usually misdiagnosed, Best of luck.

I just came on to suggest Ehlers Danlos Syndrome too.

Hi I've just scanned the whole thread so sorry if I have missed anything. I would strongly recommend having an intolerance test done (you can order online).

Cutting out foods I can't digest properly has transformed my life. I also have one client who has literally cured her debilitating arthritis by changing her diet.

Secondly - back pain can in most cases be helped with exercise/yoga/Pilates. Be sure to get a good teacher or trainer who specialises in back issues and explain fully your problem to them. I would recommend a private session 1-2-1 rather than a group class to start with.

Finally, have you ever considered something like endometriosis? I have recently been diagnosed and have found my back pain, IBS and fatigue are all linked to my cycle but I never put 2+2 together before learning what endometriosis even was!!!

Hope this is of some help x

I have looked up Ehlers Danlos Syndrome, but I don't have all the symptoms (no hypermobility, no problems healing). I will add it to the list of possibles though.

I don't think it could be endo, as I don't have particularly heavy or painful periods (although they are irregular, but I assume that's standard perimenopausal stuff). Again, will add to the list.

I could do with a massive whiteboard to draw diagrams of which symptoms could be which illness/disease. I could do a spreadsheet, but that's not as much fun.

Thanks again.

Hey Kitty,

Were you at any point bendy and flexible? It can lessen with age and joint damage. Also do you bruise easily or have velvety soft skin?

Have a look here and see why your post flagged as EDS

www.buzzfeed.com/zebrazebrazebra/31-random-facts-about-ehlers-danlos-syndrome-v5ff?utm_term=.vbDQpp0KA#.ncloVVvnD

EDS has many variants, some people are confined to wheel chairs and some live a normal active lives.

EDS symbol is a zebra as it's often misdiagnosed, ie

Why the zebra?
“When you hear the sound of hooves, think horses, not zebras.”

This phrase is taught to medical students throughout their training.

In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.

Good luck, and hope you get some answers soon.

Foobarjar, I don’t recall ever being flexible or bendy (it’s been many years since I could touch my toes). I don’t bruise particularly easily, although I am clumsy so am forever knocking into things. The skin thing doesn’t sound like me either.

However, I do have lowish blood pressure and often feel like I need to go to the loo when I’ve only just been.

Thanks for your post, it’s very interesting.

Hi OP,

I have Ankylosing Spondylitis which is incredibly hard to diagnose.

www.spondylitis.org/Ankylosing-Spondylitis/Symptoms

I had Plantar Fasciitis for many years along with hip & lower spine stiffness as well as reduced neck movement, dodgy bowel movements (Tmi - sorry)

Had MRI’s & blood tested for the HLA B27 gene which confirmed after 12 years of investigation that the AS is my illness.

I also have enthesitis, dry eyes, IBS, psoriasis & am tender all over to the point of even my DH stroking my arms makes me scream. I also recently developed aneamia.

My shoulder (before keyhole surgery) had reduced movement due to a calcium build-up causing impingement - AS is an autoimmune inflammatory arthritis, meaning my body is attacking itself in the way cancer would & that most joints & tendons are swollen (thumbs, wrists, heels and ankles)

If I get a cold, it turns into a chest infection and I have to use meds to prevent asthma attacks.

Might be worth looking into. The NHS are incredibly pro-active with me now.