Update - gallbladder out
 

Had my gallbladder op postponed by a week because of someone's emergency and then waited a whole day due to another emergency. Was finally rushed in and had the op. Came to fine, had a routine night in hospital and left next day. Hadn't had my steroid dose (7.5mg) on day of op and thought this was maybe why the SFN flared up so badly overnight - whole body wracked with pain.

Since then it has just flared up again once. The wet crawling feeling in legs has dimmed down and I'm barely aware of the awful burning much - even at night.

However I have had an abscess in my navel under the main laperoscopy wound. I was re-admitted to hospital a week ago last Friday with a horrible open wound and was put on two strong antibiotics - one by IV. Finally my cannulas kept causing phlebitis and they ran out of workable veins so I came home on two lots of oral antibiotics and seeing the nurse daily for wound packing and dressing. All healing well although it will take a while as I have a deep hole where my tummy button was. But no more infection at last.

But I am struggling with a possible peptic ulcer now so plenty to keep me occupied in pain terms!

Now down to 5mg of Prednisolone and meant to be coming off in a few more weeks and scared I'll flare up again as it's part of the inflammatory process for me I think. My rheumatologist seems to have washed their hands of me and so does the neurologist although I'm officially still a seronegative RA patient on their two lists. Does anyone else here have this experience and could the fact that my gallbladder was tucked right touching my liver, with one enormous stone, have been a reason for the SFN?

So happy to hear from you Mat....was getting concerned with your absence.

Honestly, I think you need to give a more time before making an assessment on the SFN. It is not uncommon for pain to be deferred (in a way) when you have something else going on. Your brain can only focus on one thing at a time, so to speak, and therefore your body is in healing process from the gallbladder removal. You have a lot going on pain wise and need to let these other acute issues resolve, then you'll know whether your SFN is really doing better. If I remember correctly (whether you or another poster), this has happened before...where infection or other pain sort of put SFN on the back burner as they say. Once things resolved, the SFN come right back. I hope this is not the case with your current situation, but I think you need to let everything heal before making any conclusion on the SFN.

You seem to have an issue with repeated infections. Have they checked your IgG subclasses? Checking a total IgG is not enough, as many with primary immune deficiency have normal total, yet one or more (of the 4) deficient subclasses. Just a thought.

Good to hear you are on the mend!

Indeed. Rest up.

Hi Mat
Glad to hear you came through your gallbladder op okay in spite of some post op hiccups. Hope you continue to heal without more complications.

En bloc's call on giving plenty of time to heal is spot on - everything you've been through including the different medications you had during the op plus the additional stress may have an influence one way or the other on the SFN.

Did your neurologist ever suggest that the SFN might be autoimmune caused and possibly a result of the Hashimoto's?

Take care. Keep us posted on how you're doing.

I am glad to see you posting again... many of us have been concerned.

Sorry about the infections though.

I had an employee years ago who had her gall bladder out and had PN in the feet for several weeks after. Hers was severely infected when removed.

Give yourself time to heal, several weeks I bet.

But I think the worst is over for you now.:hug:

Thanks so much for the understanding and advice everyone. I have learnt a lot in these last few weeks about being more patient. I'm beginning to realise that some people, probably myself included, may never get to the heart of what is causing what, never get a diagnosis for their weird and often terrible symptoms.

I've perhaps underplayed what has happened to me recently because a lot of it relates to a very straightened UK health service. I had this infected tissue scooped out of my belly with no anaesthesia or entinox like something out of the First World War! I had an abusive nurse to refused to help me to the toilet at 4am because she thought it was just a cholecystectomy I'd had and I was making a fuss. No concept of the huge flare of nerve pain that was immobilising me or concession to the fact that I have a diagnosed disease, RA. This despite the fact is been an inpatient twice recently, once for pancreatitis caused by Azathioprine and once for possible Vasculitis. Or the more obvious fact that one of her colleagues had given me Oramorph an hour earlier. I only asked politely if she could help me get to the toilet for a pee!

But at least seronegative AI diseases in all their varying forms are recognised here for the most part. At least I don't live in a hugely litigative society so not thinking all the time that I should sue - which would just add stress for me and cause doctors to be even more guarded about recognising and treating things that don't show up in the obvious ways.

However I'm of the view that my operation was very badly managed because the size of my gallstone (like a medium sized egg) and the unusual position of my gallbladder should have been spotted from two ultrasound scans done a few months ago when I had pancreatitis. However the deep wound remaining and the blood poisoning I suffered are as nothing to all the peripheral neuro symptoms plus what I firmly believe is a kind of autonomic neuropathy. Acute pain is a decoy for chronic pain just now as you are all saying I think.

No one ever mentions my hashimoto's because the bloods are just about within normal range with 100mcg Levothyroxine. Ironically the surgeon I was under is new to our small hospital and is a thyroid consultant as well as a bowel surgeon. I would have asked him more about this but he was so busy on his charm offensive re my infected keyhole wound that I never had the opportunity to mention my other issues.

It's all about giving these people enough time. If the system is badly under pressure and doctors fear being sued for malpractice then the chronic problems and complexities of the brain and nervous system are bound to be forgotten - even by me! If this surgeon had done his job properly and not being rushed to do the op at the end of a long day under laperoscopy - when at his own admission it should have been done by the old fashioned method.

So I am resting because I have no choice just now and I won't expect my parasthesia to have disappeared. I am still having these overwhelming sweats and don't believe that this or other longstanding symptoms are post menopausal or that they are a figment of my mind. I'm learning to trust the messages my body gives me and take them seriously - even if no one else on my medical team or my friends with proper RA do.
Mat xx

Thanks for your concern Enbloc I'm touched and grateful to you for remembering stuff about me too. Something did flag up showing autoimmunity/ infection but I can't track it down myself so need my neurologist's last letter to come through. I've used your point about break down of IgG on my list of things go ask GP about on Wednesday.

I feel I'm in a position of strength now in one respect - all these doctors have let me down with my op and are all being very charming in effort to stop me taking it any further. I plan to use my GP's sense of guilt to push for a referral to an immunologist. I completely agree that something seems awry with my immune system and I would like to find out what I order to try and prevent any further infections in future. None of them are disputing that I have autoimmunity because it's 100% clear that I do.

If I have a primary immune deficiency is there any treatment for it?
Mat x

Primary immune deficiency is the quick ticket to IVIG...which can help with autoimmunity issues as well. I really think you might benefit from a trial of it. Of course, it also helps SFN (especially immune mediated SFN).

BTW, about 25% of those with autoimmune disease also have immune deficiency.

Thanks for this Enbloc. I did ask my neurologist about IvIG but he looked nonplussed and said he didn't have a single patient like me (ie with a rheumatic disease?) on it. And this was after he had told me something had shown up. I guess the test will be how I do once I recover from this acute stuff and finish Prednisolone completely - I'm getting down to under 5mg next week.

Thanks again, Mat x

WOW, MAT52, you really have had some awful experiences. I was hurting FOR you, just reading your posts.

I sure hope things are on the mend, your infection under control and soon to be eradicated, and that things will be better in days to come.

While you may not recovery from all the issues you have been facing, at least lowering the number of issues will be a move in the right direction.

Wishing you a speedy recovery and less pain each and every day.