Hi Everyone, although I am new to SS diagnosis, I knew that my symptoms were more than a flare. I have a feeling of pressure and fullness in my neck that is a little unnerving. Along with discomfort/tenderness in the floor of my mouth. A tender bump above my thyroid.
I am so blessed to have the ENT doctor I have (her sister has SS). It turns out I have what she believes is a thyroglossal duct cyst and enlarged submandibular glands that are infected. I have an appointment for an ultrasound and I started on antibiotics. She said that it is due to the dryness of SS and massaging the salivary glands along with applying warm compresses will help relieve the symptoms. It can also help to prevent these complications in the future because it stimulates the glands to secrete saliva. It is such a relief to find out what is wrong and to have a plan of treatment.
Also, my lower body was feeling left out…on my way into my appointment I fell onto the cement and the glass bottle of iced tea I was carrying that I dropped and broke right where I landed. In I went with ripped, wet jeans and little peices of glass in my hands.
Tonight, I feel like I was punched in the jaw/neck and kicked in the knees. On the positive side no stitches necessary this time. At least my husband and I have already had a good laugh over how I sometimes get hurt. Part of me wishes it was on camera…maybe not.
Parched, I'm glad you got to the bottom of things so quickly. As for the fall, my neurologist took me off my neuropathy meds "to see how I am without them". Thankfully I see him tomorrow because after 3 months off them, all I can say is I'm glad my BF has a good sense of humor. I have dropped, tripped over or walked into more things this weekend alone than in in the course of a normal year. I am infinitely grateful there weren't any cameras rolling. LOL
EnjoyLife, I am glad you didn’t get hurt. I have had friends wonder if something was wrong with me because of my falls and other clumsy antics. I have just brushed it off as being tired or not paying attention. Just think, we could have submitted videos to the World’s Funniest Videos TV show. Did your Doctor put you back on the neuropathy medication?
I'm not very vocal on this site, but I have been diagnosed with SS for about 4 years now. By the way I'm glad to know you made it through your fall. I didn't know that my clumsiness was related to SS. Is anyone able to elaborate?
I'm not very vocal on this site, but I have been diagnosed with SS for about 4 years now. By the way I'm glad to know you made it through your fall. I didn't know that my clumsiness was related to SS. Is anyone able to elaborate?
Oh my goodness, I have been falling quite a bit lately, thought it was because of the bursitis in both hips. I can only get the shots every 3 months, and they only last about two months. I never thought it had anything to do with SS. I have bruises all over my legs. I bump in to walls and anything that sticks out. I have bruises all over my arms. I have to wear jeans and long sleeve shirts because of the bruising. My family thinks it is from all the medicine I have to take.I have a Dr. appointment this afternoon and will see what he has to say. I'll keep you posted.
I can only speak to my case, though we do have people here that are more medical and research based who can give you more insight. For me, I have neuropathy that is caused by the Sjogren's. I get nerve "prickles" all over, occasional numb patches, and some general off balance. If its really flaired up, it can effect my motor skills which is when I start dropping things, etc. I'll over reach into a cabinet and bang my hand or scrap it against things, stub toes a lot or catch an elbow on a door frame. Brain fog (loss of words, hard time concentrating, hard time following conversations, etc). I am on medication for it. I was on it for about 6 months and saw a big difference. He took me off for a few months to gauge how I am doing (LOL) but as of today, I am back on it. It helps so much. I can forget I have a lot of those issues when properly regulated. Hope this helps.
What medication are you taking if you don't mind me asking? Thanks
EnjoyLife said:
I can only speak to my case, though we do have people here that are more medical and research based who can give you more insight. For me, I have neuropathy that is caused by the Sjogren's. I get nerve "prickles" all over, occasional numb patches, and some general off balance. If its really flaired up, it can effect my motor skills which is when I start dropping things, etc. I'll over reach into a cabinet and bang my hand or scrap it against things, stub toes a lot or catch an elbow on a door frame. Brain fog (loss of words, hard time concentrating, hard time following conversations, etc). I am on medication for it. I was on it for about 6 months and saw a big difference. He took me off for a few months to gauge how I am doing (LOL) but as of today, I am back on it. It helps so much. I can forget I have a lot of those issues when properly regulated. Hope this helps.
I take Plaquenil, Tramadol, Blood pressure meds, thyroid meds, Prilosec, Acyclovir, Plus vitamins, and some other over the counter meds. The Kidney Dr. suggested I Email my Rhumey. which I just did after getting home from the Dr. He doesn't know much about SS. Really tired all the time, he wants me to get blood work done to see if I am anemic. Just another bruise on my arm when I give blood. I feel depressed lately. I wish it would just go away.
Susieq, I'm just going to throw something out there which I had to take heed of when I was on a number of medications .... have you had a pharmacist check everything you take, including your vitamins/supplements/herbal remedies and any other over the counter med together with the prescription drugs for interactions?
It is well worth giving a few minutes time to because alot of seemingly harmless products can make a nasty cocktail together or with otc and prescription medications. And my advice would be not to rely on a doctor as they are not pharmacists who are the real experts in this field.
If you wanted to start researching for yourself here are some helpful online resources. WebMD is particularly good on the vitamin/supplements/herbal side.
Susieq,
for about about three years before I was diagnosed and started on Plaquenil along with changing my diet to not eating sugar, wheat and some other foods that increase inflammation I had chronic bursitis mostly in my hips. It was so painful…I am sorry you are having such difficulty. I hope you find a doctor who can help you. I have found advocating for myself one of the hardest part of of having SS (especially when you are hurting and feeling discouraged).
I was just writing about my day when I started this thread…I did not make the connection of my clumsiness, hurting myself almost just like EnjoyLife shared could be caused by the neuropathy of SS. Oh crap, I am so dense sometimes (brain fog extreme). Thank you all. I have to go get ready for work.
Parched
Before I started Plaquenil I too was extremely clumsily. I fell one time about a year before the meds and I assume I just lost balance in the kitchen and busted my head. I came too with my cell phone next to my head and my husband calling me on his way home from work. I had a concussion and they wrote it off as veritgo. I fell 3 more times before the bad fall. For 47 years old I was worried but they did a Cat scan and all was fine. I didn't know it could be part of SS either. How exactly does it affect your brain?
I have problems with my inner ear which used to cause vertigo. I can’t blame my falls on this because SS has dried up everything to the point I haven’t had any vertigo for years.
Last year I fell while I was fishing in a beautiful river in New Hampshire and ended up cutting my knee to the bone (6 stitches). Now my sister is afraid to go fishing with me. Maybe knee pads and a helmet are in my fishing future.
Ginger, thank you.
I have been trying to read about the neurological aspects of Sjogrens. It is very complex and varied. From what I understand so far, the symptoms and presentation can be mistaken for MS. Clumsiness is a symptom (John Hopkins uses this word in the information I read on their site). Because of the possible neurological manifestations of SS, sounds like seeing a neurologist sounds like a good idea. I have had so many symptoms (some so unfamiliar and strange) it is overwhelming to acknowledge them. Sometimes, I feel like I am going to be labeled as a hypochondriac. However, I need to report the brain fog, loss of words, clumsiness and other strange symptoms such as, internal body vibrations when I wake up at night, tingling in my arms, sharp pains in odd places, frequent upper lip twitching and more. I think I was hesitant to look into this area of SS because my father who had Parkinson’s passed away this last March. Also, my husband was diagnosed with Parkinson’s 2 years ago. I guess we can only handle so much at a time. I am grateful to have a place to bring some of these concerns and feel understood. Sharing what I have learned helps and gets me outside of myself.
I will be on vacation starting tomorrow and I am planning to read more (not too much:)) on this topic.
Just now got back to this discussion so sorry for being remiss..... I am on more than a few meds but for neuropathy, I take Gralise, which is a form of Gabapentin. I also take B12 and D3 at the doctors order. He said that they contribute to nerve health and that autoimmune people tend to run low. It used to work great. Since he took me off for a few months then put me back on, I am not seeing near the same level of effectiveness. That is scaring me to death, considering how painful nerve issues can be. I will keep you posted if things change.
I understand the nerve issues I am having severe issues in my left leg and both feet most doctors think since I am diabetic it is from that and I tell them about the sjogrens they usually don’t know what that is you know most people have heard of RA but not sjogrens we need to educate the medical industry of what SS is and the damage it does and the different body parts it affects I have had sjogrens since I was about 21 and I am 48 I was not diagnosed till I was about 34 years I would go to doctors and was tested for I think every thing from Lyme disease to MS and had some doctors even tell me the pain I was feeling was all in my head and some would tell me I was to young when I was 25 to have pain like I would have or I must have hurt myself in some way who else has gone thru this
Tokio, the med that I am on for neuropathy is Gralise, which is a form of gabapentin. I am on a total of 7 prescription meds and 4 suppliments (doc "prescribed" also) Jules is very right about checking up on interactions though. My meds and supplements are such that some of them have to be taken at least 2 hours apart so I have worked out my breakfast, lunch, dinner, bed routine so they don't cause me more issues. Doing great now that I know but it caused me some problems before I knew. Always treat supplements with the same seriousness as prescriptions. They do have an effect.