Quote:
Originally Posted by mskari85
Mat, thanks for the reply. We definitely have many, many similarities with the presentation of our symptoms, other than mine being a seropositive RA diagnosis. My grandma HAD rheumatoid arthritis (that's how she words it) more like it went into remission and she hasn't had issues in years, but she did have the active disease for many years. Genetics definitely playing a role, but I do wonder what "flipped" on the gene - environmental factors? Smoking for several years on and off? Wish I could undo those bad decisions now.  Do you have any family history of autoimmune diseases?
Shockingly, the one thing I haven't done is given up gluten. I am on a ketogenic diet, I've been on it for 2 months. It's helped with the burning in my feet, however, my hands started bothering me a few weeks after starting keto and now I have tingling in my fingertips, altered sensation in the fingertips, burning in my hands, and burning in my mouth, lips, nose, and earlobes. My fingers get FREEZING cold and then when they warm up, they burn and turn bright red and that's when my fingertips tingle. I'm assuming a little Raynaud's is happening. ALL of this started with extremely cold feet (painfully cold) before the numbness kicked it. Side note, I don't eat much gluten on my keto diet, I was actually trying to avoid it, but found out it was in my salad dressing I was eating all the time.
I cheated once on keto and had pizza with friends. My entire mouth was vibrating and tingling after. Big mistake! Do you follow any certain type of diet? I've been reading these books about the immune system and how to help "recover it" with diet, supplementation, etc. It sounds a little too good to be true and I haven't read one thing about neuropathy in there unless it's presented with MS (where it seemingly comes and goes) OR a celiacs diagnosis, which I don't have. I might give the AIP diet a try, but I'd have to leave keto behind because I don't know how I could do both.
I have absolutely the worst anxiety and depression, especially lately. My anxiety was extremely bad in the two years before this all started due to a relationship ending, losing a job, etc. Do you have any issues with anxiety or depression? Do you believe those emotional issues compound any symptoms in a psychosomatic way?
Also, the link you provided me with didn't work. It went to a login page.  But I'd be interested in reading it!
Have a nice rest of your weekend and thank you for allowing me to chat! |
Lots of questions to answer and a poorly dog to care for just now as it's tea time here in Scotland!
Firstly to answer the anxiety and possible psychosomatic element to our neuro symptoms question, no I don't believe either of us could dream up such symptoms - only very few people would be fanciful enough. I'm firmly of the opinion that my own symptoms are important clues and I have had counselling and worked out most the origins of my autoimmunity. As a few regulars here know, last year I was in hospital quite a lot (four weeks in total).
Each time I was admitted I knew exactly what was causing my symptoms where doctors hadn't a clue and misdiagnosed drug induced pancreatitis as sepsis, and a post op sepsis on anxiety. They were pretty abject when they found my CRP up at 160 each time!
My symptoms guide my research and I now trust my instincts over medical opinion most of the time. Experience has given me confidence to be proactive and persist searching until I get proper answers.
I don't suffer from depression, although I was diagnosed and treated for this at one stage a few years ago so some doctors coming new to me as a patient, will see a short, overweight, middle aged woman and jump to conclusions. When they have done this, and backed up their assumptions with this depression diagnosis, I mince them!! Now they see the formal letter of complaint I copied onto my notes and realise I'm not for messing with! My old GPs on the island where I lived (and still return to for long periods) learned the hard way not to blame anything on anxiety with me!
So please don't let yourself become anxious that your symptoms are a figment of anxiety and aren't real. Equally don't panic that they are something terrible. You are articulate and clearly sensible so you need to trust yourself to know when things aren't right. I've not met you of course but I wonder if your RA and perhaps OA are probably not well controlled and this is causing your neuro symptoms. This is what I assumed was happening to me when my neuropathy progressed but now I know that my RA was secondary to this primary Sjogrens. Perhaps it is the other way round with you? And as Kiwi has pointed out, Musculoskelital diseases can have an autoimmune element - it really is not black and white in rheumatology at all - we are talking about a huge spectrum.
I dont know the significance but I have read that the spondyloarthritis family of diseases are considered to be immune mediated now, rather than autoimmune. A form of spondy, Psoriatic Arthritis most certainly causes peripheral neuropathy as one of the main symptoms - and can overlap with RA. Is this a possibility for you I wonder? PsA can affect some people without the psoriasis being present. My cousin has this type but her family on the other side are the ones with the history of psoriasis.
I don't know about my own family history of autoimmunity I'm afraid. My mum had many things wrong with her but rarely bothered to see a doctor and died suddenly at 73 from sudden cardiac arrest caused by severe atherosclerosis, despite being thin and physically active. My dad also died of cardiac arrest while swimming in the sea. He had heart problems, hypertension, diabetes and gout. I think his diabetes was a rare, late onset autoimmune type but unfortunately I never got to ask him more. My grandparents all died quite young from a car accident, septicaemia and this rare diabetes respectively.
My sisters were both born profoundly deaf and one has burning mouth syndrome which I suspect might be Sjogrens. She has awful back problems too. But her bloods were clear (apart from raised ESR) and she didn't want the lip biopsy she was offered a few years ago. I will write and tell her my Sjogrens news. We have a second cousin with primary Sjogrens who ignores it as best she can but she's getting on and the arthritis side of things was much worse when I last saw her a few years ago.
I have found that researching and understanding why I feel things physically and emotionally is the best way to stay relatively up beat. For instance, my depressive phase was out of character and so I got myself tested for vitamin D levels and found I was deficient. So I now take AdCal D3 and have never looked back. If I'm anxious it's because my symptoms make me anxious - not the other way around.
I'm lucky to have a terrier soul in me and won't allow people to obstruct my quest for knowledge. No one has used the word psychosomatic or functional or dismissed me and not lived to regret it - I'm an artist but I've inherited a good legalalistic mind and don't suffer from brain fog. Foods don't influence my symptoms at all apart from bread and sugar which make the weight pile on.
Very windy here in Scotland today. Going for a late afternoon nap now! Take care.