I have an appt with my Rheumy on Sept 12 and I am REALLY dreading it!! He has a nice bed side manner but I am starting to get the feeling that he doesn't take my concerns seriously. I have mentioned numbness/tingling in my toes to him on more than one occasion and I can only recall him saying something about PN once. And that is all he did......was talk about it. Nothing was done!! Now I have had the numbness/tingling toes for at least 18 months BEFORE I got my SS dx. I got dx with SS on 4/22/16 so I have been dealing with it for going on 2 years now!! And when it happens (some times 3 or 4 times a day) it starts burning. And it REALLY hurts!!
I also have a tremor in both hands. And like the numbness/tingling it has been going on before my SS dx. It is only when my wrists are resting on like a counter top. And now I am having eye pain, blurry vision & my central vision is obstructed sometimes. And in my peripheral vision I see black dots all the time that I think I am seeing things. I had my annual eye exam last month and go for my eye dilation in Sept (I have Pars Planitis)
I am only 42 and I feel like my body has turned on me. And I feel like I am in this fight by myself. I started having symptoms of SS right around NYE of 2015 so this has not been a good year for me. I was fortunate to only have to suffer 4 1/2 months before a dx but I feel I have paid dearly for it since! I am sooooo fatigued. Still fight with my chronic dry mouth. In pain daily (at least a 5 or more daily on a scale of 1-10) I am attempting plaquenil for the 4th time (200 mgs twice daily) and Evoxac (30 mgs 3 times a day) but I am convinced the pharmacy is playing a cruel cruel trick on me and they are slipping me placebo pills!!! I still feel HORRIBLE!!!
Sorry this turned into a novel. I am just concerned for my health.....I am too young to feel this old!!!
Hi Lisa Im sorry you are felling like this, I know the struggle but I believe you are in the right place to vent how you feel, because we can only tell “normal people” how we feel before they get tired of hearing us. I to struggle with extreme fatigue, and very dry mouth my throat hurts at all time to the point it makes me wonder if I have cancer there, or anything else, so many symptoms to the deal with that is hard to know if is, ss or something else, I think with the time you will learn how to manage the symptoms better what helps me is to watch what I eat and listening to my body when it is asking for a break, never in my life I took naps before now they are my bff… Lol
Please if you ever need encouragement just message me.
Hugs and may God bless you
Feel free to vent! At least here we do understand, and hopefully that will give you a feeling of not being alone at least... I definitely sympathise with your thinking you're too young to feel this old! I feel envious of my 70 year old Mum at the moment!
As for your rheumy, all I can suggest is perhaps keeping a symptom journal making a not of how often you get the pain etc., and if there's anything which might have triggered it. Then take that with you. Plus do some research yourself, maybe print out any helpful articles/ info you can find, and take that with you when you go for your appt. in September. Write down what you want to discuss, so that you don't forget anything, and hopefully with the research you've done it might make your doctor take your concerns seriously, and send you for some tests, plus get you some painkillers, like Lyrica for example, if you feel that you need them.
Past discussions can also be useful for info here- you can search for peripheral neuropathy and it might give you an idea of what tests and medications are helpful.
Good luck, and I hope that you get on okay! It is still early days for you, so hopefully you'll be able to tolerate the plaquenil and exovac and find they help.
Lisa,
I Understand and feel so frustrated also. My dental problems have caused me to miss
Infusions for my RA and I seem to just feel worse lately. I had to retire early and that cut our income drastically. So many problems we all face. I do feel Rheumatogists here our problems so many times a day they just don’t pay attention.
Kathy
Thank you all SO MUCH for the replies!! They truly mean a great deal to me!! I have a lot going on not only with my SS but I also have Bipolar Disorder, OCD, PTSD & anxiety (social & generalized). I have been on my mental health journey for 14 years. Then Sept 2015 I got dx with Pars Planitis (fancy words for eye inflammation) in both eyes. Was told no treatment would help because my inflammation is very far back. So I have constant flashes of light in both eyes. :( I am being monitored every 6 months ( get dilated eye exams, next appt is 9/14).
I know my family is so tired of hearing me complain. They have no idea how I feel. And people keep telling me what I should and should not be doing. This is so much harder than I thought is was going to be. Every day seems like something new shows up. Like this morning.......my right eye was slightly puffy, red, & had some yellowish discharge. My hubby thought it was allergies (I had a HORRIBLE allergy attack on Thursday) so I googled it.......came across dry eye and figured that is what it was. My chief complaint to get the SS dx was only dry mouth. So now I am not sure what is going on.......
Don't want to worry you but if that eye doesn't clear up soon it might be an idea to get it checked out in case it's infected.
You do have a lot going on- feel for you. It is hard to know what to tell people, without sounding like a hypochondriac, and it is easy to get overwhelmed when you have a lot of different health problems. But glad that you're finding it helpful being on here!
Thanks Jules!! My eye is better. No more discharge, puffiness has went down but you can still tell it is slightly irritated. And I can feel that it is slightly irritated. I'll see what happens through the night tonight and how it looks in the morning.
And you are so right......I feel like the BIGGEST hypochondriac!! But I can tell a HUGE difference in how I have felt (health wise) this entire year! This entire year has been so hard. I am on my 4th attempt on plaquenil. Monday will start my 5th consecutive week (longest stretch EVER) on it and I know it can take up to 6 months to feel full effects. So I just need to start taking one day at a time and start listening to my body!! And I need to learn that it's ok to ask for help (so hard for me to admit). I want to be around for a long time so in order for that to happen I HAVE TO take care of me.......TODAY!!!!
Limarie, you have hit on the biggest tip that we all need. Take care of you. Rest when you need, ask for help and get to know the cues your body gives. It really does help a lot for the long term. I'm sorry you are dealing with so much at the same time. This really is the place to vent, among people who get it.
i understand, have suffered for years, but i have a wonderfu family support family. I hope that we can help be of support here for this Insideous, never ending, changing painful Sjogrens!
I have been on the same meds for the last 4 months. I will try to let you know if I see an improvement. However, at this point, I am not impressed, and my hair is gross!!!