Don't read this post if you don't want to see someone having a pity party. It's okay, I'll get over it like I always do. It's the sheer frustration of this condition and not knowing when it will sneak up on you with a flare up, no matter how careful you are in looking after yourself. And as I don't have anyone to share my news with, I figured why not at least tell people who know what it is I'm going through.
What a change from last weekend when I was climbing cliff tops taking photos of the Humpback whales on their northerly migration on the east coast of Australia with all my camera gear. This episode started on Friday afternoon at work, very suddenly out of the blue I felt "odd". A severe feeling of dizziness and profound fatigue hit me like a wave, I started dropping things and the pain in my back, legs and face started along with mild tremoring. By friday night I had areas of numbness, pins and needles in my hands and feet and joy-oh-joy a new sensation of my fingertips on my right hand like they had been scalded with boiling water and somone was applying electric shocks to them.
It's 4am on Monday morning now. I was woken up with terrible pain in my face - and someone has put sharp rocks behind both of my eyes - along with the return of bright swirls and circles of white/blue flashes of light everytime I blink. The photophobia is so bad I can't turn on the bathroom light without experiencing daggers going through my eyes. I'm guessing it's the return of the optic neuropathy. In wanting a cup of tea to have with some pain control, I discovered how bad the tremors are at the moment (I knew my legs were really shaky, but didn't think my hands were quite as bad). I think there is more sugar on the kitchen counter than ended up in the cup. My doc told me to video my obvious symptoms, as usually by the time I get an appointment they are mild or gone. So for what it's worth here is what it looks like - hands and head tremors (forgive the scruffy 4am - feeling like doo-doo appearance).
The wonderful world of CNS Sjogrens - a gift that keeps on giving.
Oh, and I thought why not show you what my passion is - wildlife photography, though I don't know how much longer I can do it if things keep up like this.
One of my favourite whales playing - we've nicknamed her Freckles for obvious reasons.
You are in good company to vent away with us. There is just no way that anyone can experience this and not feel upset in one way or another!
You know, when I was first diagnosed with overlap syndrome, (the very beginning of the diagnosis), and one of the many autoimmune diseases that I had many strong symptoms of, but not yet a dx, was of course Sjogren's. I was first given the med Savella, but when I started to tremble like this, my Dr discontinued it. I have had a couple/few long since discontinuing the drug, so it must be the SS.
I was fighting terror when it happened to me, and I've never gotten a very good explanation from any Dr about it. I was sent to a neurologist who ran me through all kinds of questions and tests only to be diagnosed in the end as "stiff". I have not been back to him since, and don't plan to return. That was the second neurologist! Oh, and mild CT in wrists, barely worth mentioning, with everything I have.
Though this may be the disease, it may also be a med. You are so well versed in this, but I can only encourage you to once again look up the SE of any meds you are currently taking to see if they could at least be a contributing factor.
Even if this is the disease, there has to be a way that you can still do your photography, possibly with a tripod. I am in no way arguing with you, just trying to stay positive for you, as I know all too well what this can do to your spirit.
Hang on tight, girlfriend, we are ALL here for you with open arms and an open heart!
I think ranting is very helpful to us and the video was a great ideal. I hope when the doctor sees it they can figure out what is causing it and what can be done to help control it.
I love the things on your counter top mine are always such a mess and freckles is beautiful.
Thanks SK, I really do appreciate the words of support. It is frightenting and a bit depressing when it happens. Luckily I know from experience it generally goes after about a week. My doctors can't offer any reasonable explanation either. I think there is just not enough known about it, and regardless I don't think there is a great deal they can do for it. it's a wait and see thing.
The reason I know it's not medication is that I had these tremors in episodes over about two years, one episode was so severe I couldn't walk properly and it lasted for about a month. This was all pre-medication. The only thing they've put me on at the moment is Prednisolone and I've been on it continuously for the past 5 months waiting for my specialist appointment and evluation for more appropriate long term meds. In this time I've only had one smalll flare up, and this one.
My Magnesium and calcium levels are good, I'm daily monitoring my glucose levels (due to the pred effects) and it's been fine. Other main chemistries are good and my FBC is about on par except for my ESR and CRP. PTH is okay.... so, waiting, waiting, waiting. I think once I've had the specialist appt and on something more targetted than a cortisone, I will feel more in control of this condition.
Yes, that was about the duration of the episodes I had too, it leaves as mysteriously as it comes!
I have had the scalded fingertips a couple of times too, red, swollen, burning itching, but think it's the Rayanud's. I have photos on my camera for the Doc of those! Geez, I never go empty handed!
I was thinking the same thing pb, what lovely things you have, and how beautiful your home must be! Havens are important to us!
Your photography is top notch! That's Nat Geo quality!
Thanks, yes, for once the doc had a good idea - in this age of amazing gadgets it only makes sense to keep an electronic diary of symptoms, it helps them understand the frequency and severity of symptoms.
The thing with CNS SS is that the cells causing the problem are our T-Cell lymphocytes. these little guys are the part of the immune system that normally recognises things that it considers " not self" and attacks them to remove them from our bodies. That's the problem, when they get confused and think our own bodies are foreign - they attack. That's the whole crux of autoimmune conditions our bodies got the wrong message somehow. In CNS SS the lymphocytes attack nerve tissue, and in my case it appears to be my spinal cord being invaded. When they do cytology or histopathology in cases like mine, they find infiltrates within the cord material itself of clusters of lymphocytes. It makes sense of the clinical signs, because inflammation and damage to the spinal cord inteferes with body function. The trick with treatment is to minimise the damage, try to stop the lymphocytes from attacking and deal with the residual damage.
Thanks for the compliments, I've found it very therapeutic to have lovely things around me, and to make or create them in the first place (I'm a great finder of crusty treasures waiting to be transformed into something beautiful). I have had a dream for so long now, to be able to give my boring job and become a professional photographer. I don't think I've given up on that idea altogether, but I have to admit it's getting harder to envision right now. I've been published a few times, and managed to win a few good photographic competitions, but finding the strength some days to trudge through bush and swamp for photos has become a challenge.
SK, I am not convinced Pred has anything to do with this either. Usually pred tremors are hands only, and generally the onset is within about 30 minutes of dosing. Mine aren't, mine ar whole body tremors, plus, these are the same tremors I had before starting on Pred. I agree with you, there is something more to SS in terms of these symptoms.
Again I am very new to all of this and I'm a guy with what is primarily a women's disease. So it is very awkward for me to take part in these discussions. But, Tog, the 'flare up' your going through sounds very close to what I have been experiencing the past two days. It started at the crack of dawn with a dizzy sensation accompanied with a headache that increased steadily throughout the morning and then the tremors in my hands and feet. I could not see them so much as feel them. This has been in partner with pain all over my body. Then last night I fell asleep for about twenty minutes when I awoke with a strange feeling of anticipation which was a prelude to my nose bleeding. The heavy nose bleeds have been going on for about one year now. And of course the fatigue. I was diagnosed with SK about three weeks ago so I have a lot to learn still. I go back to the R. doctor in three days to discuss the latest tests that were performed on me. As I write this 90% of my brain still tells me I don't have this disease.
I am so sorry you are dealing with this. I woke up with a horrible episode just this past week and I know how scary it is. The tremors lasted the better part of the next day. What's freaking me out is that the tingling and odd pains have been worse since then too.
This is so the perfect place to vent. You have people that totally get it along with a wealth of information. I'm glad you shared it with us. The only thing we can do is get through it together.
I have the neuropathy too and damn it for being so unpredictable. It took me years to get help and validation from knowledgeable neurologists. My symptoms move around and it felt like every time I went in I had new and different complaints. I felt that it was difficult for the physicians because they couldn’t have a clean set of symptoms and I was frustrated because of the pain and insomnia. I also feel like people around me could not understand one day ok the next day terrible. People are more logical and don’t understand the randomness of the disease and it is demoralizing. I was dx with breast cancer this year and received an outpouring of kindness that I never received with the horrible neurologic attacks. So you have empathy from me. I know when I push myself physically or emotionally I get worse symptoms so now I hold back and I am trying to find the right balance for myself which is hard because by nature because I’ve always been extremely outgoing. Thank you for sharing I don’t feel so alone.
Tymmesone....I can't imagine how frustrating this must be for you. Its hard enough to get a good diagnosis, let alone getting one for a disorder so few males get. I sincerely hope you feel you are in good hands. Please don't feel awkward in the discussions. We are all dealing with being an oddity in the outside world as it is. Thankfully it isn't that way here.
I know exactly what you mean about tremors you can feel more than see. I get those and it is such an odd sensation. And frustrating to have yet another symptom that people can't see.
I went through a streak with the nosebleeds too. Using a humidifier when its dry out helped a lot. I have heard others mention different ointment type products that help too.
I hope that you are having some relief from the tremors, and that it all subsides very quickly. It would be nice to have some solid answers, but not sure they will be coming.
The explanation about the spinal cord makes a lot of sense.
There are a few guys here who active in the group right now. Their feelings about this are along the lines that perhaps there are more men out there with this disease, but it's is not being considered by their Physicians, because they are men, or because of their age. They also feel that men don't tend to Doctor as much as women. I hope I have represented them as correctly as I recall.
I hope that you do consider yourself part of the group, as we are very happy to hear from you!
BTW, it is always possible, at anytime, to start a men's group here, it can be a public or a private one, to discuss things that only men deal with. Just click on groups, it will allow you to 'add' a new one at any time.
Thanks SK, the tremors and weakness have improved today, so has the face pain. Feeling a little 'flat' like hangover type of sensation. Hopefully tomorrow will be better still. I was interested to read from others posts how many SS sufferers get this. I wonder why it isn't described more in the journals and clinics lists of symptoms? is it overlooked? mistaken? ignored? put down to something else?
Tymmensone, sorry I didn't reply earlier, yesterday was a bit challenging for me. I eccho SK's thoughts on men and SS. In reality, there is only one gender symptom variable between us (which you will never have to worry about!). The rest is the same - and we are all in the same boat, so please don't feel uncomfortable discussing and joining in. This is a fabulous place for resources, connecting, support and understanding.
Along the lines of symptoms so many of us share…..the link that was posted here to Patients like me is something we all should be doing. Set up is fairly easy. From there they email for a quick check in to rate how you feel today, then have a box if you want to type in what makes it a good or bad day. They are supposedly using it as direction from the actual sufferers to decide on research and treatments that need to be done. And to catch things that are being missed. I think there is a lot of that going on with us.
I was very glad the doc that I saw after my episode took my symptoms seriously. And she sure didn't just blow it off as stress, etc. Its a relief to be taken seriously finally but we still have a long long way to go.
I copied the beginning of the post and the link….
Here is a site that has stats about the disease compiled from sufferers not medics so it is far more accurate. :)
I had a consultation with my G.P. today and I asked him straight out if he knew much about Sjogren's and he admitted that he knew very little about it including it's symptom's. But he is the one that had me tested for auto immune two months ago which led him to refer me to a specialist. I have had several surgeries in the past five years and he is the first and only doc to be interested enough to suspect an autoimmune disease and pursue the diagnoses, so I think I'll stick with him as my primary doc at least for now. I see the Rheumatologist tomorrow to discuss the results of the extensive tests that was performed three weeks ago. The two doctors know each other and have said they would work together on my case which I'm thinking is a good thing for me. Today has not been a great day for me with symptom's.
TY.
Tog said:
Thanks SK, the tremors and weakness have improved today, so has the face pain. Feeling a little 'flat' like hangover type of sensation. Hopefully tomorrow will be better still. I was interested to read from others posts how many SS sufferers get this. I wonder why it isn't described more in the journals and clinics lists of symptoms? is it overlooked? mistaken? ignored? put down to something else?