1. Community
  2. Bones, joints and muscles
  3. Sjogren's Syndrome

Exhausted and confused

Posted , 7 users are following.

jeanne-mar82023
jeanne-mar82023

Hi, hoping someone can help me. I have been in pain for about 8 years now. Whole body hurts, mainly back, traps and neck. Dry mouth and down there where it matters. I never feel good, cant remember when last I did. Often dizzy, alwyas very tired, I cant exrcise at all, used to be a personal trainer and now I cant even walk to the shop. I feel dead and hating every minute of it. Dont have a lot of faith left in doctors as they have been giving me quite the run around. Now, I am on a mission to sort all this out, went for blood test, twice and both times came back positive for Sjogren's, but the Rheumatologist still doesnt think I have it as I dont have dry eyes. Can I have it without dry eyes? I dont even want to ask her questions anymore, seems like you not supposed to ask doctors questions, just sit, listen, accept and feel like poo for the rest of your life. Please can someone shed some light on this for me. I also have 0.00 testosterone.

0 likes, 34 replies

34 Replies

Prev Next
  • karenskip
    karenskip jeanne-mar82023

    Posted

    I also have zero testosterone and although females don't need a lot they do need some. I had implants twice but hated them so have just put up with it.

    My symptoms are salivary gland problems, stones and infection but recently had them x rayed with dye and we have left it at that as no reason for this. I have also been diagnosed with dry eyes and use ointment at night. My mouth gets dry when exercising to the point I can't get enough saliva to swallow and also when talking. My face has frequently swollen and I have had multiple lymph nodes swell below ears, above ears and all around back of head.

    I also am getting lots of muscle pain and never feel like I have rested even after sleep.

    I have just this week been to max facial again with my salivary gland infected even after removing a stone ....the submandibular one, and told them I also was diagnosed with dry eyes too but they have not said about sjorens or it could be a possibility even.

    Seems so strange about tge the testosterone thing too.

    • aitarg35939
      aitarg35939 karenskip

      Posted

      Try chewing gum while exercising, without it I could never exercise at all. As I mentioned I chew only a half pieces at a time since what I'm after is the saliva production rather than the flavor. There are meds that can get a lot of moisture into eyes and mouth and I wouldn't survive without those either. The same company that makes toothpaste & mouthwash I use also makes both spray & gel moisturizers. The gel is very strange the first time or two, but spread it around your mouth and it will help.

      I had forgotten that 7 yrs after my diagnosis I got a new gp who said my numbers weren't right, couldn't have SS. After a while I told her about some other symptoms and said a doc I'd met socially had noticed the symptoms and had asked if I were under treatment for an autoimmune problem. Symptoms -disappearing fronts of eyebrows & intermittent sore/tender spots around nose and eyes - were true but the rest was b.s. She sent me back to they no and finally accepted his reiteration of the diagnosis. But the thing that got us past the impasse of client says & gp disbelieves was hearing other symptoms and what that mythical doc said.

      I no longer recall if those symptoms are tied to SS or some other autoimmune issue, but I still have them.

      Good luck.

    • jeanne-mar82023
      jeanne-mar82023 aitarg35939

      Posted

      Thank you for the tip Aitarg. My main problem with exercise is the pain. Its so weird, it feels like my whole body closes in on itself, or something weird like that. I started rollerblading now, hopefully I can keep up, been twice and seemed fine, but to get myself motivated to do it, that is a different story.

      I am not very keen on going on any testosterone treatment as they say its better for woman to have less rather than more and I have heard some horror hormone treatment stories. I will give it a couple more months to see if I cant sort this out naturally. Actually too scared to ask gynae as he obv will want to put me on something.

      Thanks again, good to know I am not the only "hypocondriac" around as doctors make me believe.

      Have a good week.

  • sally83545
    sally83545 jeanne-mar82023

    Posted

    Hi Jeanne-mar,

    it took me years to get diagnosed what I learned is this. Autoimmune disease presents itself in so many ways it could be anything. ANA (Anti Nuclear Antibody ) test is the first step. Don't pigieon hole yourself thinking it has to be a Sjogrens diagnosis to get treatment. It could be another type of Autoimmune illness. The pins and needles creepy crawly burning soles of your feet issues are (what I was told ) from Peripheral Neuropathy (can look up online). Many symptoms of Autoimmune overlap you may have more than one issue going on (sorry). After my ANA came back positive he looked further with an SSA and SSB test specifically for Sjogrens. I was not having dry eyes all the time just once and awhile. I did have crushing fatigue,pain everywhere, trouble sleeping, brain fog, pins and needles, thinning hair etc.

    Diagnosis: Mild Lupus, Sjogrens and most recently with the advent of swollen joints and stiff hands, Lupus Arthritis (similar to RA) there are over 100 types of Arthritis (this was new to me)! I was started on Hydroxychlorquine 200mgs twice a day. (research). It takes about six months to start feeling better and the meds side effects can be rough at first but if you are willing to power through the discomfort you WILL feel better! My suggestion: if you are showing positive for Autoimmune ask your doctor what you can do now to be proactive to feel better and get your life back if he does not move forward or have something to offer or some kind of plan I would get a second opinion. An Autoimmune disease diagnosis can take up to 7 to 10 years! There is no reason you should have to suffer as long as I did. (I was the one to insist on a ANA test after talking to a girl who has Lupus in her family). I know you are tired and feel awful but try to research as much as you can and advocate for yourself you deserve to feel good again hope this info helps. Good luck and feel better,

    Sally

    • jeanne-mar82023
      jeanne-mar82023 sally83545

      Posted

      Hi Sally,

      thank you so so much for the information. Why didnt I do this ages ago? Really thought I was going crazy.

      i am going to research the best doc in town (not crazy about my doc's attitude)  for 2nd opinion and also doing quite a bit of my own research. Need to keep this under control, if mine is not bad yet, then I dont want to know how bad feels.

      So sad that you cant trust doctors and have to be a bully to get stuff checked and done. Luckily I got to a point where being nice is not an option anymore.

      Thank you again Sally and keep well.

      regards

      Jeanne

       

    • barbara98940
      barbara98940 sally83545

      Posted

      Hi Sally, if you're on Hydroxychlorquine you need to watch out for damage to the macular in your eye.

      The best way to do this is using an Amsler grid, preferably daily. An Amsler grid is just a grid of black lines with a black spot in the middle. You cover one eye and stare at the spot and see if the lines are wavy, or have any bits missing. Then repeat with the other eye. If wavy lines or bits missing, you go down to A&E, or eye hospital emergency walk-in clinic, or opticians asap, preferably within 24 hours.

      There's treatment that can be done to stop wet macular degeneration from getting worse, but it can't repair damage already done, which is why you have to be quick.

      Not everyone gets this side effect, I'm just telling you about it so you can watch out for it and take action.

    • barbara98940
      barbara98940

      Posted

      You won't know without covering one eye that there is macular damage, because the brain is clever and fills in the gaps with what it thinks should be there.
    • sally83545
      sally83545 barbara98940

      Posted

      Hi Barbara!

      Thank you for your concern about my eyes. It is my understanding however that the damage that could possibly occur is not Macular but Peripheal.

      I went to my Opthamologist whan I started taking the Hydrox. Had an exam an established a Baseline Chart. I only have to go once a year for a repeat exam and do not need to test everyday. The patients who suffered vision loss from Hydrox. had been precribed much higher doses.

      Much has been learned about the drug since then. Unfortunately it gave the drug a bad reputation and many people refuse to try it. I think this is a shame because for me it was the first step in getting my life back!

      Thanks again,

      Sally

       

    • barbara98940
      barbara98940 sally83545

      Posted

      Hello Sally, I'm glad you're not affected. My information came from the information leaflet they gave me in August 2015 when I was prescribed hydroxychloroquine. Glad it's working for you.
  • jeanne-mar82023
    jeanne-mar82023

    Posted

    Hi everyone, went for my MRI, I have a big Schmorl's node, exactly where my pain is situated!! So there dr's, I am not crazy and making up pain.

    read something interesting now, it can cause inflammtion and get infected, do you think this might be why I have Sjogrens/autoimmune cells in my blood (not high enough according to my doc to diagnose me with Sjogrens, dont like or trust her at all, not going back.)  Do you think there might be a link between these two?

  • onebratt08
    onebratt08 jeanne-mar82023

    Posted

    Your story sounds very, very similar to mine. I have no diagnosis yet, but haven't convinced my doc to run the Anti-SSa and Anti-SSb tests on me (however, never a positive ANA or high CRP or Sed Rate). I was a trainer too, until 4-5 years ago when I suffered an injury. I haven't been the same since and the symptoms keep piling on. I have the same terrible neck and trap pain. I can exercise, but mostly cardio and I have to take lots of rest. Any kind of weight training makes that neck/trap pain flare badly.

    On your low testosterone, is it a low free-T? I have a low free-T and was told that's nothing to be concerned about. It means the amount that is circulating in your blodd. the overall T measurement is what you should be concerned with.

    Keep fighting. That's what I keep doing.

    • jeanne-mar82023
      jeanne-mar82023 onebratt08

      Posted

      I am fighting, but some days I have no idea what to do with myself and have to be so strong to not just take a whole hand full of painkillers and sleep for a whole week! Going through a rough patch now, but havent been sleeping enough. I am so young, but have to live like a lazy fart just to feel ok, its killing me!

      Went to the gynae, he says all my results was due to the pill, total and free T was low and sex binding globulen 3x the amount it should be, but he says those are normal results when you are on the pill. Off now for almost three months, hoping my skin and everything will start going back to normal soon. He said we will keep an eye on things though. 

      Seeing the back doc next week about my schmorls node hoping they can do something about it, I think if I can eliminate that issue it will make a huge difference! Still hoping that this might have something to do with the rest of my systoms, doubt it, but hey, you never know. 

      So I am sorting this out one step at a time, but its time to sort it out, cant go on like this. 

      Sorry, just had to vent a bit wink Thank you for all the advice. 

    • onebratt08
      onebratt08 jeanne-mar82023

      Posted

      I feel for you and I hear you! Not sleeping is the worst side effect in my opinion. I'm pretty young also, not yet 40, and going through this for 5 years. I had planned to grow old gracefully and now I see people my parents age enjoying life more than I am! I will be thinking of you when you see the back doc. I hope he can help you find relief.
    • jeanne-mar82023
      jeanne-mar82023 onebratt08

      Posted

      Thank you smile Yes, my folks also have a more active and fun life than me!

      The scope doc phoned me today, there is inflammation as well and he is suspecting Chrohns. This is crazy, its like my whole body has inflammation all over, but none hectic enough for any solid diagnoses. At least I am getting closer and finding stuff. 

      Enjoy the weekend. Strongs.

  • jeanne-mar82023
    jeanne-mar82023

    Posted

    Hi all, some more developments, yet no diagnoses!!! I went for a brain scan, there is inflammation/lesions. Went for a lumbar punch, which I hope I never have to do again! And all that came up, no MS, positive for Sjogrens in blood tests. So now I am back to square one with the added brain leaions.

    been very dizzy for the last month or so.

    Any suggestions? What should I ask the dic? What on earth are we missing?

    I feel lke I can crawl in a hole and stay there.

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.