Still searching for disgnosis

WyleECoyote

Hi all,
45 year old female that has been cursed by servere nighttime lower back pain pretty much every night since my late 20s. Developed bunions in my feet in my late teens (despite no family history) and wearing low heeled quality shoes.
Tried Physiotherapy, Chiro, acupuncture (some success), myotherapy, you name it in my 20s. All equally unhelpful.
My 30s saw me sleeping on the floor for several month stints plus general deteriorating quality of life due to pain/painkiller side effects.
In my 40s I'm again living somewhere with quality private medical care (London) and I've been to a rheumatologist that said my blood tests were clear, plastic surgeon for lower back lipoma removal, then a spinal surgeon that diagnosed severe edge ration of the lumbar facet joints.
Now with a pain surgeon who has performed two RFI ablation of the lumbar nerves with minor improvement but has advised that the lumps around my lower back indicate the issue is not just bone related but also muscular.

My father has advanced rheumatoid arthritis of the hands. My hands are not bad although I get some aching in the joints of the forefinger and middle fingers during winter mornings. My feet are still a mess - I have been in orthotic shoes for years now due to foot pain as well as lower back pain.

The feeling in my gut is that I have (had) early onset rheumatoid arthritis and was surprised when blood tests didn't show anything significant according to the rheumatologist. Should I even care what the disgnosis is? Is there any drug (besides painkillers) for rheumatoid arthritis that is likely to improve my quality of life even if I WAS to get a diagnosis? Should I persist with this.

I'm on 50mg tramadol plus 35mg codeine and 1500mg paracetamol each night and even that is only enough to slow me to sleep uninterrupted about half the time.

Massively grateful for any insights into the diagnosis route and whether it's worth persisting. Thank you.

[Deleted User]

Dear Wylie.
Welcome to the forum there are lots of lovely people here who will help you enjoy the forums.
Choose a forum you like and just post.
All the best.
Mod Christine R

dreamdaisy

Hello, it's nice to meet you but I am sorry you have had to find us. There is evidence that auto-immune inflammatory arthritis can run in families but it isn't just a case of having either RA or OA (which isn't an auto-immune kind although thinking in beginning to change about that). There are around 300 kinds of auto-immune inflammatory conditions, some of which are sero-positive (i.e. rheumatoid factor is present) or sero-negative (i.e. it isn't). I have one of those and the accurate diagnosis took years. You have seen a rheumatologist who has dismissed you so that may indicate that arthritis is not the cause of the trouble but I too was initially dismissed by a rheumatologist even though my inflammatory markers were very high. It's a complicated world.

Auto-immune arthritis is caused by an over-active immune system, do you have any history of allergies, asthma or hayfever? The meds I take suppress my immune system thus controlling disease activity. DD

Grb

Hi im new to this. I havnt got a diagnosis of anything. Went to gp with really bad lower back pain. Cant sit in one place for too long and pain in my hands fingers wrists knee shoulders and feet. Its as if a dart is being thrown and randomly affects various joints at once. Naprozen is helping but doesnt take pain away completely.

[Deleted User]

Hi Grb & welcome to the forum.

It's the weekend, so you may have to wait awhile for more replies. Also, posting on the Living With Arthritis forum with a question might help.

In the meantime, do take a look at the Coping With Pain section of the website: https://www.arthritiscare.org.uk/managing-arthritis/coping-with-pain

All best wishes. Mod Bryn

WyleECoyote

moderator wrote:

Dear Wylie.
Welcome to the forum there are lots of lovely people here who will help you enjoy the forums.
Choose a forum you like and just post.
All the best.
Mod Christine R

Hi Christine,
Thanks for the welcome.
Kind regards,
WyleE

WyleECoyote

dreamdaisy wrote:

Hello, it's nice to meet you but I am sorry you have had to find us. There is evidence that auto-immune inflammatory arthritis can run in families but it isn't just a case of having either RA or OA (which isn't an auto-immune kind although thinking in beginning to change about that). There are around 300 kinds of auto-immune inflammatory conditions, some of which are sero-positive (i.e. rheumatoid factor is present) or sero-negative (i.e. it isn't). I have one of those and the accurate diagnosis took years. You have seen a rheumatologist who has dismissed you so that may indicate that arthritis is not the cause of the trouble but I too was initially dismissed by a rheumatologist even though my inflammatory markers were very high. It's a complicated world.

Auto-immune arthritis is caused by an over-active immune system, do you have any history of allergies, asthma or hayfever? The meds I take suppress my immune system thus controlling disease activity. DD

Hi DreamDaisy,
Thanks for the welcome. Thanks too for the helpful info about diagnosis not being as simple as OA or RA. I didn't know that. I don't consider myself to be a highly allergic person although I've certainly suffered from hay fever over the years on and off. I have always suffered from photo sensitivity though and I have read that is a symptom related to arthritis.
Kind regards,
WyleE

dreamdaisy

As with all conditions and diseases we think we know what they are but when we become affected we begin to find out that they we know very little. Many people are of the firm opinion that there are two kinds of arthritis and they only affect older people. Both are erroneous beliefs but remain the norm amongst those who are not affected.

Hayfever is in an indication of an over-active immune system but I've not come across photo-sensitivity as a symptom of arthritis. I've gained it as side-effect of one of my medications but I don't regard it as a bother because it's easy enough to cover up and stay out of the sun. DD

stickywicket

Hi there and welcome from me too. I'll be brief partly because DD has givem you a good, comprehensive reply (No surprises there ) and partly because I'm on my tablet and rubbish with a touch keyboard.

Should you "even care what the diagnosis is?'" I would. You may feel the damage has already been done. And, indeed it has.But it will keep rolling on amd, if it is autoimmune, you might at least be able to slow its progress. I believe (though I'm not sure) Ankylosing Spondylitis is sero neg. Why not check it out and see how you match up?

WyleECoyote

Hi Sharon,

Thank you very much for these links. It was helpful and interesting reading.

I've just has my third set of MRIs - the last set being two years ago - and I saw my surgeon on Friday. For the first time ever he's been able to see disc involvement in the early stages of degeneration. L4-L5 is starting to bulge and this is where I have a 77 degree angle lordosis. (Apparently normal angle is up to 60 degrees?)

This new finding, along with notable deterioration in the facet joints behind that section of spine (spikey-looking with cysts now) apparently indicate a fusion of the disc and the facet joints is the best choice, rather than just the facet joints which is what we were considering earlier. He's recommending keyhole surgery and showed me a model of the prosthesis (?) on his desk. There is a bone graft inserted into the disk cavity to fuse it and titanium fixings to bolt the facet joints together. It's called XLIF - Extreme Lateral Interbody Fusion.

Believe it or not I am excited about this diagnosis and the prospect of surgery. It's been twenty years of pretty severe pain a lot of the time. Any chance I have to get more control over what medication I take on a daily basis (pain killers plus meds for depression which I developed as a result of pain-lack of sleep messing up my serotonin levels) would be very welcome.

Many thanks to everyone again.

rayray

I hope that this is the root of the problem, that the surgery helps you and that you can be pain free soon.

I too have had a whole series of symptoms and joint problems but no clear answers. They now all seems to be random bad luck. So many joints are affected but I don't know why apart from my hips being a congenital problem. When I had surgery two weeks ago one of the doctors asked me why I had so many joint problems - I of course couldn't answer.

I suspect one day they will find out why some folk seem to get multiple random joint problems and others get none.

Good luck!

WyleECoyote

webmanager wrote:

Hi WyleECoyote
I am not at all surprised to read that you are excited about getting your diagnosis, knowing the nature of the beast, so to speak is always such a positive step. It sounds like your surgeon is very good at explaining things and that the MRI scan has provided him with the information he has looking for.
Let us know when you are going to have your surgery I am sure there will be lots of people up for some pocket duty to support you
Best Wishes
Sharon

Thank you guys! I've never met any of you but chronic pain is a unusual friend we all share.

I just found out yesterday that they have a last minute space (from a cancellation) for my surgery on Monday next week. I'd already made up my mind to go ahead and was just waiting for a slot. So tomorrow I have my pre-op and on Monday I go in.

It's an XLIF disc and facet fusion of L4-L5. Not sure what they are planning to do about L5-S1 yet. Probably will find out tomorrow. I'm excited, nervous and afraid of both success and failure for different reasons. Failure to resolve the pain would obviously be the worst outcome but strangely enough resolving it makes me nervous too - like ending an exploitative relationship - you know it's better than staying in it but you've been in it so long it has begun to define you and your entire approach to life. I don't remember a time where I could just go to bed and sleep. I don't remember a time when I could walk around at will. I don't remember a time when I could plan air travel without fearing the journey would be hell.

One step at a time. I know I am getting well ahead of myself and need to calm down. Hahaha.

Emotional times!

[Deleted User]

wow that is quick, we shall all be thinking of you in the moderators team and we send you all our best wishes
Sharon

WyleECoyote

moderator wrote:

wow that is quick, we shall all be thinking of you in the moderators team and we send you all our best wishes
Sharon

Thank you Sharon and everybody,

Had the XLIF on Monday. Anaesthetist warned me first 24 hrs would be the worst. The clinical assistant to the consultant suggested it would be Day 3. The first 24-48 was a breeze but now I'm on Day 2 or 3 (depending if you start counting at Day 0 or Day 1) things are a little tougher.

Last night was my first night off IV morphine and I felt a bit like Leonardo DiCaprio after the bear attack in The Revenant. This morning the nausea was pretty bad too but I seem to pulling up much better today. Just saw the Physio and she's happy.

stickywicket

Good I'm sorry, I've missed all this as I've been away. How are things now?

WyleECoyote

moderator wrote:

wow that is quick, we shall all be thinking of you in the moderators team and we send you all our best wishes
Sharon

Thanks Sharon,

I'm going home today and feeling pretty great. I was in for 5 nights. My surgeon and the hospital were all superb.

Now to take it quietly for 5 weeks and then hope it resolves a big chunk of the pain.

Thanks everyone. Feel free to contact me if you are considering XLIF.