Hi All. I've had a succession of appointments over the past week and am ready to go to bed for a month - except three young adult sons all arrive for Christmas tomorrow.
The appointments started in October with neurology - my neuro promised to get back to me about the ever progressing numbness and pins and needles everywhere. But she never has and her nhs letter has still not turned up for other specialists despite me and my other doctors pestering for her input. Not sure what this is about - she wanted to track down old MRI scans of neck from a different hospital.
Then I had oral medicine specialist who is a fab woman - kind, interested and thorough. I'm being referred to one of her root canal specialists for their advice on one of two root canals that is needing removed and replaced - both right by my trigeminal nerve.
Then I saw audiologist and was told that, after a long trail looking for cause of my tinnitus and hyperacusus - I do have a certain frequency hearing loss on both sides as likely cause of both. I've been given little white noise aids to wear all day everyday. So far they are okay but, despite being tiny, they make the insides of my ears very itchy after a while.
Then I saw ophthalmologist about my punctal plugs. He had seen me once and promptly discharged me immediately after inserting these - but I've insisted he should keep me on his list. He commented that my eyes are extremely dry still despite the plugs sitting cozily in my tear ducts. But as long as I remain vigilant as ever about drops he says there will hopefully be no corneal damage.
The next day I was back at the hospital for my appointment in the Connective Tissue Disease clinic where I thought I would be seeing my rheumatologist. But, once again, I saw the vascular doctor who specialises in Scleroderma. He says small fibre neuropathy accounts for almost all of the problems I complain of - including chronic constipation and difficulty weight bearing . He says he needs gastroenterology input on Cellcept but feels there is no clear, measurable benefit to be had from my maximum dose of Cellcept. However he wants me to continue on it until he's had a chance to get the opinion fron my neurologist, rheumatologist and gastroenterologist - so a multidisciplinary team meeting early next year is needed before decisions are made he explains.
I then have to urgently see my GP (primary) about a really nasty infected rash under my breasts - which he explains is fungal. This has me wondering because I have a yeast infection below too and in corners of my mouth and these very itchy irritated ears. I'm avoiding yeast rich food inuding all sugars to see if this helps and covering myself in anti fungal cream.
Then today I see the gastroenterologist for the first time. He is a lovely man and a great new addition to my medical team I'm surprised to discover. I was expecting it to be a one off appointment at the request of the vascular doctor. But instead he explains that he agrees that my problem at both ends of the GI tract is autonomic neuropathy related. So he wants me to have a barium swallow in January/ February but meanwhile he wants to make sure I'm being properly cleared out by taking a medicine in the new year.
Later I googled it find it's sometimes used for severe IBS-c. The side effects include orthostatic hypotension and it says use with caution if patient has hypertension. I have hypertension but forgot to tell him. I phone his secretary and leave a message about this for him.
Then later, after eating I realise I keep feeling faint. Tonight I briefly did faint after dinner - after rushing to the toilet and "going". This experience is not unfamiliar to me - it's happened occasionally for as long as I can recall. But usually only in response to stress - sometimes during or after eating. Now it happens daily - sometimes just as I stand and take a few steps, usually immediately or a short while after eating a meal. So can anyone who has similar explain this to me please? Is it part of the Sjögren's related autonomic dysfunction I wonder? Whenever I take my own BP and check heart rate on standing from lying down I don't seem to have readings suggestive of PoTS.
I will report this to my doctors when I next see them but meanwhile it would be helpful to learn what this might be?
Me thinks you are getting bombarded with too much information too fast. A lot of the stuff that we are told needs to be slowly digested and given consideration. Specialists tend to overwhelm us with all they know about a certain problem and it overwhelms us.
I would consider seeing your primary and dealing with the immediate issues. The yeast is something that needs to be addressed ASAP. People with autoimmune disease can have overgrowth of yeast as can people with a compromised immune system. In other words people who have problems fighting off viral and bacterial infections.
Also, you have been told that you have autonomic neuropathy and the weakness and fainting are significant problems that also could be addressed by your primary doctor, For one thing, people who have neuropathy with hypotention when they stand will have problems when they eat. The blood pools in the GI tract to digest the food and this takes blood away from the brain. Just standing takes blood away from the brain from all of us when we stand up and having the potential for hypotention is just increased in people with autonomic neuropathy.
The med given to you for your colon may list orthostatic hypotention as a side effect but that does not mean that everyone has the problem. With any of these issues prudence is needed to sort things out and the big thing is to not panic. You are exhausted and overwhelmed with your illness and raising a family and it is very hard to deal with this. You need your primary to help explain things to you so that you can keep things in perspective.
Do not panic....If it was me I would not try to do everything that was told me in that week. Nobody can keep track of all these things and trying to keep track of how you were before changing treatment or adding or subtracting a med would be almost impossible to sort out.
I don't know if you have addressed the fact that you are overwhelmed with all that is going on in your life. People with autoimmune diseases are at high risk for anxiety and depression. Many times adding an antidepressant will greatly decrease the amount of gastrointestinal issues a person has. Our brain makes serotonin to help maintain our mental health. The GI tract also produces a large amount of serotonin. When we are under stress and illness our body becomes short on serotonin and adding the antidepressant greatly levels out our bodies response. Good luck. Irish
Hi Irish. I think you are right it has been rather overwhelming and I do need a debrief with my calm GP. Unfortunately I can't get an appointment as she is fully booked up as only part time but I have booked a phone consultation on 4th January. I once had a terrible experience with an antidepressant so I avoid these type of meds like the plague now. What really helps me is understanding the cause of my symptoms. So the gastro specialist was really kind and helpful and, now he knows about the orthostatic hypotension and hypertension medication. I feel better. If he still wants me to try the new med in the New Year then I'm happy to try it. He will see me again on 1st February to see how I'm doing.
Thanks for your explanation of how the eating and syncope/ OT/ autonomic dysfunction work. I will copy and paste your explanation so I can let it sink in. When I was younger syncipe was definitely stress related - but now it seems to happen several times a day when I'm not expecting it and I don't think it is related to stress - although I could be wrong. It's not always when I've just eaten - sometimes when I get out of bed in the night or out of the car. I'm getting better at anticipating it but it still startled me a little. It also happens sometimes with very cold drinks or even swallowing cold air. I will tell me doctor about this but the fungal infection was diagnosed and is being treated by her colleague.
This fungal infection is my biggest source of stress because it is so uncomfortable and I can't even wear my bra! The doctor said I should keep using the cream and it might take up to six weeks to clear. I've had athletes foot and pompholyx eczema on hands and feet before but never in these places! I'm not sure if it's the Cellcept or my Sjögren's or both. I will hopefully have lots of distraction now with young family staying and plenty of dog walks!
Be aware that the immediate cause ad effect of your syncope are from going from a sitting position(legs bent which increases pressure in the veins and arteries thus keeping the blood pressure up. As soon as you stand up you lose that pressure from the bent legs and the blood all runs out of your head and literally into your legs and feet. Many people have issues with cold liquids also and other triggers that are very specific to them.
There are some people who have to wear very supportive hose to keep pressure on the vblooid vessels which keeps the blod up in your brain and upper body. I don't know if it would help to wear a pair of the cheaper knee high support hose that you can buy at the regular walmart,etc and other stores. The really tight hose usually are prescription and fit up over the knee and are hated to put on but really work to prevent the fainting.
Also, be aware that there must be a record of the antidepressant that you took years ago. If a doctor would mention this type of med there are so many new med and they are not from the same "family" of meds so that there is a much better chance for success. There are also some other non antidepressants that might help with anxiety and circulation issues. Medicine really has come up with lots of new things that work well. Good luck. Irish
I use an anti-fungal powder in any area that doesn't get lots of air.
The corners of your mouth problem may also be caused by fungus.
I have IBS-D, and it sounds like you may have experienced IBS-D. Some people alternate between the two: IBS-C and IBS-D, the worst of both worlds!
I can control my IBS-D with the FODMAP food elimination diet, I am especially lactose intolerant. I developed this at age 75, for goodness sake. Any lactose (ice-cream) and I immediately have rumbling and carrying on, and the next day I have the D. I take loperamide which is over the counter as soon as I have an episode of D,
My syncope was only related to Cymbalta, but was quite frightening and happened a couple of times a month until I stopped the Cymbalta.
All of my gastric problems are related to nerve damage that is part of my dysregulated Immune System.
And I have severe Small Fiber Neuropathy which is part of the same nerve damage.
I don't, however, have hypotension.
MAT51 I have had a succession of doctor's appointments, rather like yours. I have outrageous tinnitus (in three part 'harmony) and I actually have hearing aids to wear, which masks the sound. But I seldom wear them. I have learned to 'ignore' the noise unless I think about it. Next to my bed I have a sound machine that makes a steady soothing noise which masks the tinnitus a bit, at night. I can't have it loud enough, however, since it annoys my husband when it is louder.
I am having surgery for my swallowing problem after the first of the year. I hope to start the Physical Therapy to strengthen my back. I just haven't had the time or energy to face that this month.
My husband is having a procedure tomorrow to 'shrink' the turbinates in his nose, which interfere with his breathing, especially at night.
It is indeed always something. It does sound, Mat51, as if you have put together a good 'team' of specialists to help you. And that you have done a great job of self advocacy with this team: so essential.
Regards, Elaine
Irish I'm very grateful for your help understanding the mechanisms behind orthostatic hypotension and feel more convinced that the swings from hypertension to hypo are defintely part of my autonomic dysfunction now.
However I really don't believe I'm anxious or depressed in a way that warrants medication. I'm of a naturally sanguine disposition but I do suffer from the problems that attend my autoimmunity and this includes extreme sensitivity to many drugs. I don't even take pain medications these days - just put up with a degree of pain a lot of the time rather than risk further scary drug intolerances.
Thanks Elaine. I defintely don't have IBS-d!! And if your bowel problems are neurogenic then I don't think this is classed as IBS but I await my gastro's letter confirming this. Rather, I think the trouble is very sluggish peristalsis caused by the neuropathy failing to give the correct signals - very common in Parkinson's Disease, Diabetes and MS. I already take a pretty maximal laxative treatments but I do have haemorrhoids and I'm guessing these are part of my present problem. I'm told by my gastro that my diet won't affect my bowel movements as this isn't about lack of roughage or irritability of bowel it's about the nerves.
I was all prepared to try Low Fodmap diet but he said the important thing is continuity (I think he can tell my diet is already pretty healthy) and sticking to foods I can taste and swallow easily. This at least takes some anxiety and pressure away from thinking hard about eating as I think I'm a bit prone to disorder around eating for historical reasons - always fighting off becoming obese again. These dietary regimes and preoccupation with food elimination isn't always helpful - and can be very counterproductive, even harmful for people like me.
I too had a horrible time on Cymbalta - more from the increase in Sicca and gastritis it caused - but trying to get back off it was totally hellish. Gabapentin made me see double. Amitriptyline caused severe Sicca and palpitations so I'm hopelessly bad with symptom treating drugs. Instead I deal with all this by trying to understand the underlying processes that cause these symptoms in the hope that I can manage them better without medical interventions for the time being.
I agree with irish about getting the thrush/candida (fungal) mess cleared up FIRST! This can take time...a good long time with some cases. You must stop not only all sugars, but all carbs too...as they are sugars also. So breads, rice, pasta, etc. And you need medication to help get this under control. There are several options and you need to talk to your GP about the best one for you.
Thanks Anita. I know you're right about sugar and starch and Candida but it's been Christmas and I have not had the willpower. New year is a new start though back on the AIP diet maybe - although my guts are so sluggish that this just made things worse! Meanwhile the 3 respective creams are doing their job pretty well so perhaps it is just a superficial skin fungal infection after all. My doctors don't believe in systemic candida unless people have AIDs or are very old.