Autoimmune condition? (Warning long!)

[Sunmoonearth]

Already posted this in autoimmune section but is very quiet there.
I'm really hoping someone can help.

Had hip and low back pain for 10 years. Been back and forth to GP and mostly ignored.
Finally referred to an orthopaedic consultant in May. After MRI diagnosed acute sacroilitis.
Sent for physio and pain management consultant. First pain person was hopeless.
Saw someone else who repeated MRI (same again but saw wear and tear on hips as well). And he referred me to a consultant rheumatologist. Blood test was ANA positive. Also positive for Anti Thyroid Peroxidase (261) and anti thyroglobulin (940).
Normal thyroid function maintained apparently.
He didn't really say anything to me during the appointment but wanted another MRI of a slightly different area (the 4th MRI since June!!).
I'm really fed up. No one has helped me with my pain at all. No one has given me any tangible advice. No one has prescribed anything to help me at all.
The physio is excruciatingly painful and she isn't helping me at all. It's so painful afterwards I need to take lots of codeine based painkiller afterwards and I'm usually in tears.
Oh and I have had a DEXA as well but no signs of osteoporosis at all.
Anyone help with what all of this means? Anyone help me with a best guess?
I can't understand why 6 months of investigations and endless xrays, MRIs and blood test and none of the consultants are telling me anything.
This is all private via insurance. They've all promised to write to me but never do.
All they do is ask me back for more appointments and tests.
Please help me find some sort of a solution to all of this.
Tia. 

OP, was your foot pain on the heels? PF?
I have PF and fitflops feel the most supportive of all shoes and I can walk for hours without a problem. In case you have some in the house to try.
I'm a fan of Birkenstocks, but with PF they are only OK around the home in small doses.
I hope the feet suggestion and your efforts to investigate that work out for you. Please come back and update us.

While I’m not going to minimise the foot pain, the fact that the OP’s blood tests were a wee bit wonky and the GP isn’t really looking further concerns me also. Esp B12.

Did they do an ena blood test after your ana? ana is positive in about 5%of the population who do not have autoimmune disorders. If the titer was high( 1:160/320 or higher possibly depending on lab) that would suggest an autoimmune condition. An ena blood panel after that should be able to identify if it were a connective tissue disease or not.

Also the ana results cone in different patterns. Do you knows yours? Each pattern more closely linked to some health conditions more than others.

House.
No they did nothing else after the positive ANA.
I have since been back to GP who said the ANA was weakly positive and my anti thyroid things were not worth worrying about 🙄
I have another appointment with a pain management consultant tomorrow.

I'm also going back to rheumatologist and I want to see an endocrinologist about the thyroid issue.

I've not yet had any treatment for anything. I'm fed up.

What about your diet? I've had similar symptoms as you for over 10 years. I find I do much better when I do the Whole30 and am convinced a lot of the pain is as a result of food intolerance. Stopping alcohol has also really helped.

You need to let the pain person tomorrow know that you have had thoughts that life is not worth living as a result of the pain. I've been there.

I do feel for you, OP. In the UK your GP and most endocrinologists you see will say that your thyroid function is OK, but many would disagree. If you go to the Thyroid UK forum at healthunlocked.com/thyroiduk and post your blood results and a summary of your symptoms, they will talk you through what your blood results show, in a more detailed manner. You can also find suggestions of endocrinologists on there.
It is complex, but worth a try.

Nigella.
I don't drink. Never have. Never liked alcohol.
I'm lowish carb diet and I eat a fair bit of protein.
But eating is erratic and is/has been issue.
Thank you.

Aunty. Interesting web site. Thanks.
I wish I could find a way of getting a pain consultant, a rheumatologist, endocrinologist and my gp into a room and tell them they can't leave until
They have sorted me out! 😁

Nigella. I don't think I can tell the pain consultant that I have considered ending everything. Don't know how I'd find the words.

You could print out part of what you have written here, and give it to them, OP?

How did the appt go?

Ring the London pain clinic no.9 Harley st and ask for dr Singh he will get you comfy and maybe some steroid injections

OP It'll be low B12. It was the first thing that occurred to me on reading your first post, before you mentioned your B12 was low. I was in agony with lower back/ hip pain for years with no cause found and it was all down to low B12. It took 3 months of B12 injections every other day to be pain free, and even now (5 years later) if I space the injections out more than one every week, the pain starts to come back.

You eat meat/dairy, therefore your low B12 is not caused by diet, it is caused by an absorption problem. This could be Pernicious Anaemia, which has no definite test anymore, or it could be another problem... it doesn't really matter as treatment is the same.

You should never have been given B12 tablets, you should have been prescribed B12 injections. Your B12 level is now high because that is the amount of B12 being picked up in your blood... this is a false high, and not what you are able to absorb. B12 shouldn't be tested once treatment has started for this very reason.

There is a great B12 Deficiency support group on Facebook that is well worth joining, it'll keep you on the right track re getting properly diagnosed and treated. Unfortunately most doctors don't have a clue how to do either properly

Pain management consultant cancelled this morning. 👎🏻 it's rebooked for next week. Very disappointed but can't be helped.

I've been taking the B12
Tablets for 6 weeks and GP retested B12 levels and they are now over 400. So tablets are working. No difference in pain.

The various latest MRIs show:

Sacroilitis - which fullfil AS AS criteria for acute sacroilitis. Degenerative changes in sacroiliac joints, bilateral sacroiliac joint arthropathy.

Degenerative changes to right hip

Mild odema in ischimofemeral spaces bilaterally - sign of ischiofemoeral impingement (if any of you MNers know what on Earth this is - please tell me!)

Adductor Longus tendinopathy

Greater trochanteric inflammation bilaterally

Gluteal para tendinopathy.

Along with the positive ANA
And the anti thyroid antibodies.

The GP which is normally a bit Teflon actually referred me to the local rheumatology service. Wait is 4 months long....

Private medical insurance are paying for the pain consultant and maybe another rheumatologist and a further MRI of my upper back and ankles (hurts too). And for physio. Seen a physio already but I stopped after 6 weeks as she was hurting me and wouldn't listen when I told her that half an hour with her meant I needed codeine based pain killers for days afterwards.
After her, my right hip has gotten so much worse.
Found new physio 3 weeks ago. Saw him and at the end of the appointment he announced he was going to be away for a month. So here I am waiting and waiting. And this isn't NHS. It's private.
GP offered their physio but no appointment until Feb.

So lots of poking and prodding but no one has actually helped me at all. Given me any medication or treatment. After 6 months of investigations and tests.

I'm upset and fed up this evening. I'd been waiting for the private pain consultant for a number of weeks and now I'll have to wait longer.

I can't have steroids as I've previously had an allergic reaction.

I've had a go at an anti inflammatory called Etoricoxib. Took all the pain but left me with tunnel vision and once it wore off awful banging headaches which turned into migraines. It also sent my blood pressure sky high (178/116). Shame because it actually worked on the joint pain.

Gp offered the standard antidepressants. Seems to me that if you're a middle aged woman, they feel the need to offer them as soon as they clap eyes on you.

Dr Singh should be able to see you this week. He is a hero. Will get you into pain killers that work and does injections once a month at hospital who cancelled xxx

I used that anti inflammatory too
Can you try
Lidocaine patches on lower back
Tapentadol
Robaxin

Have you tried those

GP here. Not trying to excuse anything you feel has been done wrong or badly just thought more info might be helpful to you.
Sounds like you have made a bit of progress with at least getting information.

The process/order and in some cases choice of investigations sounds a bit odd and that is probably because it was done privately which may have thrown your GP a bit.

I agree rheumatologist and pain consultant is the way forward here. 5-10 % of the healthy population are indeed have positive ANA so it's not really a useful test but best person to interpret given that you also have the MRI findings is a rheumatologist.

The Vit B12 was not likely to improve your pain (I appreciate some on here found it did- I've never seen that happen before) but it was/is worth trying anyway. Where I work if you have a low level the lab automatically run an IF antibody test (for pernicious anaemia which is pretty accurate) and if that's neg we almost always treat with oral tablets now.

I think the thyroid thing is a red herring. It isn't be normal NHS practice to even check antibodies in someone with normal TSH. Now you know you have them it's worth knowing that you have a higher chance of becoming hypothyroid in the future but this will not be causing your current pain(s).

I wouldn't completely rule out steroids in the future but worth discussing the reaction you had with anyone who suggests them (steroids are one of the treatments for anaphylaxis- it's more likely you had a reaction to some other component of the steroid given than the steroid itself. If it was believed to be a true steroid induced anaphylaxis I would consider referring you to an allergy clinic for advice but I don't think that's the priority here).

Your reaction to the etorocoxib is unusual and worth discussing with someone- GP or rheumatologist. Have you had your kidney function checked since you took it?

If you have had pain for years whatever the cause most pain specialists (and many other doctors) now feel it is important to try and understand what happens to your body and brain in persistent/chronic pain and how these natural adaptations can often make things worse. There are lots of resources about this but I particularly like 'tame the beast' it's time to rethink persistent pain' you can search for it on youtube.

Finally good luck and beware anyone who says they can 100% make the pain go away (especially in the private sector).

Cult. Tried the lidocaine patches. A whole new level of weird. Numb bum cheeks but painful underneath. Not very helpful.

Not tried any of the others.

Halloumi. I've been back and forth to GP for 10 years with this pain. I've been constantly fobbed off (put ice on, put heat on, do yoga, have a bath, have antidepressants, go for a walk, rest it - it's your ovaries you don't exercise enough, you exercise too much etc etc etc). Not once. Not one single time I was referred not even via private medical insurance.

It wasn't until the private medical insurances FaceTime GP service referred me to the orthopaedic surgeon in May that something finally started happening.

I had seen another pain management consultant in London (recommended by the physio who hurt me) and the very first time I met him he said "I can take all your pain away". And then he wanted to give me lots of expensive and pointless (and painful) procedures. I said no thanks and have sought a second opinion with the pain consultant I am currently waiting to see. I also though he sounded like a bit of a tosser and didn't exactly fancy someone like that poking things into my lower spine!

Neither my GP nor the pain management consultant thought the reaction to the etoricoxib was particularly unusual.

Ugh.

I wondered about Platelet Rich Plasma Therapy. It's been used successfully in the states for sacroilitis. And the NHS uses it for knee and hip treatment.

Perhaps it would help with my right hip?
I'd be willing to give it a go with the sacroiliac joints too? Have you come across this?

Mild odema in ischimofemeral spaces bilaterally - sign of ischiofemoeral impingement (if any of you MNers know what on Earth this is - please tell me!)

Greater trochanteric inflammation bilaterally

Just wanted to quickly highlight these two from what I know of hips (son has had several hip surgeries).

Ischimofemoral impingement is where there is narrowing of the ischimofemoral space (between the lower part of the femur where it joins the hip and the lower part of the pelvis) and the small muscle called the quadratus femoris that lies there is inflamed. The pain from that is felt deep in the bum, the hip, the groin. If you google it & look up images, you'll find some that point to the areas.

Greater trochanteric inflammation is also known as bursitis - if you put your hand on the point of your hip which sticks out the furthest & press, you should elicit pain - the bursa lies over the greater trochanter.

Hope that helps or makes a bit of sense. I'm not medically trained, but have spent years on orthopaedic wards at Gt Ormond St Hospital.

GP retested B12 levels and they are now over 400. So tablets are working. No difference in pain.

The tablets won't work because you have an absorption problem, otherwise you would be getting enough from your diet

@Hallloumi
The Vit B12 was not likely to improve your pain
It's actually really common for B12 deficiency to cause pain, and therefore be improved if given enough injections

IF antibody test (for pernicious anaemia which is pretty accurate)
This test is not accurate at all, it is thought to be only about 40% accurate. The only accurate test for PA was the Schilling Test, which is no longer available

if that's neg we almost always treat with oral tablets now
Unfortunately this is a common mistake made by doctors, leaving many many people in ill health, and mis-diagnosed with other conditions. Unless B12 deficiency is caused by diet ie vegan or very very low in meat/ dairy, then it should be treated as ABneg PA and injections prescribed

An excellent book for GPs re B12 deficiency is "Could It Be B12" by Sally Pacholok and Jeffrey Stuart

www.amazon.co.uk/dp/B00MERDLOE/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1&tag=mumsnetforu03-21

I would look at having a spinal block / ketamine infusions / b12

Also
Pilates on a reformer has helped my back and my mental health.

I really think better oral pain killers are the key here whilst you work out what the actual problem is

The London pain clinic saved my life
I am not pain free but I am so much more comfortable

I'm on Naproxen 500 mg for my sacroiliitis, works amazingly, no side effects.

And physio made my pain worse too.

Cult. Ketamine infusion? sounds dodgy? What is it?

Cheese. I've tried Naproxen. Vomiting awful tummy pain, diarrhoea. Yuck. Never again. Shame as DH used them for a back and shoulder issue years ago and he rates them so I'd hoped they would help but no.

Bubble. The B12 tablets must be working as my blood levels have gone up. If I wasn't absorbing it, taking the tablets wouldn't have made a difference. The B12 probably doesn't have anything to do with the rest. Erratic eating/eating issues.

Queen. thanks so much! Brilliant info. V helpful.

anyone know how the impingement thingy is treated??

anyone know how the impingement thingy is treated??

I had a shoulder impingement (similar) and treatment was physio, anti inflammatory meds & steroid injection. The injection helped, but it doesn't last long. I'd assume treatment would be along those lines. You need to reduce the inflammation - but not sure if it would address the narrowing & muscle irritation. You need to ask pain consultant.

I'm assuming you took them with food?