Quantcast

Sjogren's Syndrome Support

Tired of being tired!

Hi all. I was diagnosed in May with SS. This came as a result of loosing my saliva literally overnight between Christmas and New Year. I had had two teeth removed three days before Christmas and thought to start with they had hit a nerve or something causing this to happen. I have a great oral surgeon and she suspected straight away SS. I had bloods witch showed connective tissue antibodies, then I had an MRI and lip biopsy witch confirmed the SS.

I am at the moment taking Pilocarpine, (this is the only med available in NZ for dry mouth). I have tried it in oral solution and am currently taking it in a nasal spray. I get a sudden rush of saliva but this only last for about an hr. I have tried sprays and gels, but these seem to make me dryer.

I have constant fatigue and muscle aches at the moment. Going to GP in the morning, hopefully get a referral to a Rheumatologist, as I haven't seen one yet. Looking back I have had symptoms for years, but I think my GP just thought I was a hypochondriac. Two years ago I had a hysterectomy, I came out of theatre with aspiration pneumonia, then got an infection in my wound. During my second 6 day hospital stay my liver function levels went seriously high.

Sorry to go on. I have struggled with my weight for the last few years, suddenly in the last two weeks I have lost 6kg, is this normal. And other symptoms can I expect.

Any replies will be grateful.

Hello

besides dry eyes and mouth here are some other symptoms

  • Joint pain, swelling and stiffness
  • Swollen salivary glands — particularly the set located behind your jaw and in front of your ears
  • Skin rashes or dry skin
  • Vaginal dryness
  • Persistent dry cough
  • Prolonged fatigue
  • I hope you can see the rhuematoligist soon so she/he can check for other problems as many people with one autoimmune illness have others that over lap. Please let us no how the appointment goes with your doctor.

Hey bones,

Our nurse mod purplebutterfly has given you some good info, I can only echo the need to be seen by a Rheumatologist. You may have to take a firm stand with your general practitioner to get there though.

Many of our female members have gone through reproductive problems, so this could all be connected to autoimmune. Looking back we can see many things, even from childhood.

I'm not a medical professional, but hopefully they will also check your thyroid!

I hope this works out for you without having to get yourself upset, but please try to get to a Rheum!

Wishing you well,

SK

Hi, I have seen my GP, he has started me on Plaquenil and referred me to a Rheumatologist. Should be seen within a month, so here's hoping. Have also started getting small lumps on my right forearm, my GP thinks it is all connected. Now I also have a urinary tract infection, going to use cranberry juice as I don't want to take any more meds than I have to, so hopefully the cranberry juice works.

Hi Bones, i was just diagnosed in May this year as well. I can totally relate to the fatigue, it can be so overwhelming. I also have lumps on my right forearm and right wrist. I had an ultrasound today to see if we can get some more answers. I’ve been told for years the biggest lump is a fatty tumor. The Dr I saw last week didn’t think it felt like a fatty tumor because it didn’t move like a fatty tumor does. We shall see…

I hope you get in to see a rheumatologist soon too. Wishing you well, Michele

d-Mannose from the health food store really helps with a UTI.The first day you take 3 capsules three times daily. Second day 2 three times daily. Third day 1 three times daily. Usually helps. Taking one a day is a good preventive.

Hope you feel better.

Bones, I am so sorry you are suffering, but I think seeing a Rhemy will begin the process of finding exactly what medications you need. Just like SK said many of us have reproductive issues and recognize we have been ill for years until we finally spoke up and said we've had enough and need serious HELP!! Do things that bring you joy...singing, watch favorite movies, read an engrossing book, take a walk...anything to make you feel YOU are in charge and not your illness. By, the way I am jealous you lost weight!! This is a perfect place to vent, be educated and make friends. We are always here for you, Michelle

The Rheum will most likely want to run tests before telling you much, they have a set protocol to follow in most countries. They usually want to be the one asking the questions.

The best thing you can do is to start a list and add to it anytime you think of something or notice something. Give him the copy to add to your records. Find out if autoimmune runs in the family if you can. If a parent or grandparent has arthritis, try to find out what kind it is. The reason is that Osteoarthritis is a wear and tear kind, all the rest are autoimmune.

Make a list of all current meds and supplements, as they will most likely want to know to avoid any interactions.

Hi Michele

Thank you for your reply, these lumps have just started in the last couple of weeks.



Sick&Tired said:

Hi Bones, i was just diagnosed in May this year as well. I can totally relate to the fatigue, it can be so overwhelming. I also have lumps on my right forearm and right wrist. I had an ultrasound today to see if we can get some more answers. I've been told for years the biggest lump is a fatty tumor. The Dr I saw last week didn't think it felt like a fatty tumor because it didn't move like a fatty tumor does. We shall see...

I hope you get in to see a rheumatologist soon too. Wishing you well, Michele

Thank you to everyone for your kind words and thoughts, they are much appreciated <3

HI Bones,

Welcome. As for other symptoms you may find it helpful to peruse past discussions and blogs. I'm sorry that you have this diagnosis but know that you are among friends who are willing to hear your frustrations. I hope you can find some relief soon. God bless,

Cynthia

Hi I’m new to this site. And I’m so grateful it’s here for me. I have no salivia. I have thck white spit in my mouth. My lips get raw they crack & split open and bleed. I’m also below the knee Amputee. My eyes look like the walking dead. My body gets bruises on my right Breast…Go figure so I’m trying to cope with everything
And it isn’t easy. Plus i’m a recovering alcoholic…Who can beat that…Lol.One Day @ A Time

Oh Kat, I'm sorry you're dealing with so much.... hang in there. Yucky as it sounds, you are definitely among people that get it.