Hello everyone, here I am moaning again! I am so fed up with being in pain and have a new set of pains in my jaw,ear, head, neck and even running down into my collar bone. I had a parotid tumor removed a year ago and thought that would solve a few problems, but everything seems to have got worse since.Just touching my jaw by my ear hurts like heck, don't know what it is, and all my doctor does is write prescriptions for stronger and stronger painkillers. My teeth problems continue, and three weeks ago I had two retained roots removed. Before the numbness had worn off I felt the pain and knew what I was in for, but it was worse than I ever imagined. I ended up in bed for three days, temperature sky high, face swollen, in tremendous pain, I thought I was going to die, and my two poor boys were downstairs on their own fending for themselves. At one point I had this image of me dying and one of my boys finding me, thats how bad I felt at the rare times I was actually awake.On the fourth day I managed to get to the G.P and he just gave me tramadol, he didn't take my temperature, ask any questions, nothing.I just crawled back home, wondering why I had bothered going.
Now my dentist wants me back on Monday to have another two teeth out, she has made my plate ready and has been waiting for me to be fit enough to go and finish my treatment.I am just picking up after the last extractions and don't know what to do.How can I put myself through all that again with no support? Do I put my boys (12 and 14) through seeing their Mum like that again?
I don't know what to do anymore.I was advised to have all my teeth out, but then found this lovely dentist who managed to save the few teeth I have left.Is it bad teeth that are causing all this pain or is it something else?I seem to have infection all over my mouth, so if these last two come out will I be better in the long run?
I know you don't have the answers for me, but I had to just write down how I am feeling just for my own sanity!
I feel so lonely, isolated, scared,and confused right now about what to do.
I can't change Doctors because I live in the middle of nowhere. I have no friends and no family who could come and look after me and the boys if I go ahead with the extractions on Monday. In an attempt to help me, and get some advice out of the Doctor my dentist phoned him and asked if he thought she should proceed considering what happened to me last time, and he said he thought she should, and has sent a prescription to the chemist of painkillers (that I already have) and thrush treatment because I get thrush every time I have treatment of any kind at the dentists.His main advice for her was to tell me to squeeze lemon juice into my mouth following the procedure.
I just want to know what all the pain is now, and an explanation of what exactly happens to me when I have teeth out, why do I get so very ill?I don't want opiates to add to my ever increasing pile I just want answers!
Thank you so much for letting me rage on here about my fears,if I hadn't got you all to vent to at times like this I think I would explode!
I promise one day I will write the most positive, cheerful post on here to make up for all my negative ones! Heres a positive thing to end this, six weeks ago I finally passed my driving test, and my house is up for sale and I am getting out of this awful place!
Rosie x
Dear Rosie, never apologize for expressing yourself...sometimes this forum is a person's only outlet, and we understand that. You are in a terrible position, and I don't know what to tell you that would make it easier for you, without having the support of your doctor(s).
The fact that you became so ill following extractions would make one think of either infection (with the fever) or a major flare (often caused by any invasive procedure). I know my doctors, (rheumy, dentist and GP) wouldn't have let me have the extractions without prescribing antibiotics to start the day before and continue a standard course, and bumping up my prednisone to double doses for a few days around the event. Maybe you could discuss this with the dentist before ever subjecting yourself to the second procedure. Make sure you tell them that pain control, although important, is not your first concern...you have a systemic illness that they should make every effort to protect you from! If they have any questions, feel free to refer them here!
Do the boys have any school mates they could have a sleep over with for a night or two, to give you a break and some recovery time? Are you affiliated with a church or any social groups that might help? This could actually lead you to some friends you didn't know you have...just a thought.
I'm looking forward to you cheerful upbeat post, but remember, you can unload here any time! Congratulations on passing your driving test! Oh, just a suggestion, but when showing your house for sale, try to avoid terms like "middle of nowhere" and "awful place" ;)
Hi Rosie :)
The worst pain I have ever experienced has always been dental related. I'm not a doctor but the experience you describe certainly sounds like an infection running out of control after the root extractions. I'd have a word with your dentist about it before having further work done. Dentists can prescribe antibiotics and also prophelactic antibiotics if infection problems are forseen. I'd mention the fever because that is not a normal post dental reaction!
I've never found a painkiller yet that touches dental pain. I really feel for you.
Take care - Scottie :)
Oh Rosie, how awful. You've been through so much. I wish I could do or say something to make this easier for you. The suggestions you've already gotten are good ones and the only thing I can add is to also encourage you to vent here any time you need to. We really do understand what you're feeling and even though it makes us sad that we can't be there to help you, we want to "hold your hand" in the only way we can. Please keep us posted on how you're doing.
Rosie, You sure sound like you had an infection with that procedure. Like Linda says the doc and dentist need to have a plan ahead of time to include antibiotics and pain meds. Also,it would be great if your kids could stay with someone at least for a few hours now and then to give them a break and you a break from worrying about them.
Please make sure to call someone if you get ill again following a procedure. Also, if you have a lot of infection in your mouth/teeth get the darn things all pulled and have it over with. I had so much infection and things are so much better since my teeth are pulled. Dentures aren't that bad.
I hope that when you sell your house you are able to move somewhere that will provide more opportunity to socialize and meet people. Being isolated is tough and even more so with a chronic illness. Hugs and prayers to you. Irish ;D
Hi Rosie,
((Gentle Hugs)) to you and I hope this dental procedure is the last one you need. It's quite possible that your teeth were already infected when they were pulled. After the extraction it just released it into your body and there by causing the fever. Could be you need the antibiotics before having them pulled as Irish mentioned.
Take care and let us know how you make out. I sure hope you have less pain with this procedure.
Hugs, Pooh
Rosie,
I said a prayer for you and your precious boys. I do understand. I am having a lot of severe dental problems also. I need all my teeth extracted. It scares me too, because of all my infection they don't want to numb. I also don't have the money. Something will open up though. You please come anytime to tell whatever kind of news. That is what we all are here for. A wonderful place we all come where we KNOW others understand what we are talking about. Besides, when I read your post , it helped me. So see you never know when what you are writing is helping someone else.
susanep :)
Thank you, all of you for your wonderful support. For the first time in weeks I feel less alone.I just don't want to be negative all the time on here but then I get so frustrated and low that I end up posting really miserable stuff anyway!
I wish health professionals would listen to me. Where I lived before the suggestions made by some of you would have been routine, I was always put on steroids before, during, and after any traumatic procedure, and antibiotics if needed. I don't know why I have been treated this way here, its just like they are not interested, or think I am weak and am putting it on. I know I am not a weak person, and I know for certain that I don't make a fuss about nothing.I know how ill I was last time when I had the extractions, and I know in my heart I am going to be the same this time, and it is a terrifying to know that I am going to be that bad again.
I still haven't made my mind up if I will have it done tomorrow, I am convinced that there is major, major infection going on especially in the one tooth she is taking out tomorrow,I only have to press the gum above it and the smell is disgusting (sorry to be so gross!) and all my gums are hurting,I have an abscess above the retained root she pulled out last time which hurts like heck, so would it be wise to have more stuff done....oh I don't know.
I think the dentist feels I should just go ahead and have it done, and she feels the infection will go after she has taken them out.
Even more worrying this week my 14 yr old had to have two teeth out, his Dad had to drive 68 miles to come and pick him up, then drive him another 160 miles to the nearest clinic that would sedate him!The dentist who did it said all his teeth are crumbling and rotting away and he had the two out, and seven fillings! He also said he would need more out, and that he had never seen anyone that young with such bad teeth!Can children have Sjogrens?I couldn't bear it if poor Jake had it too.I have four other Children and none of them have any problems with their teeth, and Jake has always taken care of them and doesn't hardly ever eat sweets or drink fizzy drinks.His reaction after the extractions was similar to mine, it has really knocked him flat, he had it done on Thursday and he still looks awful and is sleeping a lot of the time.
If I took him to my Doctor and voiced my fears my Doctor would probably think I was totally mad!
Oh well, enough of my moaning for one day!
Thank you all so much for being there, and I will let you know what I decide for tomorrow, and whether I was brave enough to have it done!
Love
Rosie x
Rosie, I sure hear you. Miserable to have face and head pain. I always feel like the old oatmeal commercial from years ago....you know where the bowl followed you everywhere you went, like you couldn't shake it! I've been dealing with this very thing minus the tumoror surgery (yet). Mine really started up at it's worst after an auto accident. I have found the only thing to help with this pain is physio therapy. Be sure it is a registered therapist. My therapist, Jeri, is my life saver. You know we can really take allot us sjogies but nobody says we have to be heros. So when my jaw and face even my neck and temple area by my ear "thickens" and stiffens the only thing that brings amazing relief is my physio, my favorite when I have just had to much to bear is a kind of heat lazer ultrasound kind of thing. It's a little white gun kind of thing that she uses a gel with and heat massages the affected "thick area" breaking down the inflammation. It is heaven. I find relief almost instantly that stays away often for weeks depending on what i am doing or how I'm flaring that aggrivates it again. I know it might be kind of expensive, but this pain is no way to live. I don't believe doctors are too respectful of physiotherapists but I swear to you Jeri has been my savior far more than my GP since the accident. Please give it a try, I sort of understand your pain I think and it sure is no fun. As far a mouth issues, i know my plate bothers me at that time too. There seems to almost be a reaction with the plastic they use, my mouth ends up burning like biggebers and swelling til I have to remove my plate. The tissue is red and swollen and there are raw spots, I use salt water rinse and put up til it feels better only wearing my plate when i have to. Will put in a prayer or two for you, Sandra
Rosie, I don't know where you live but am wondering if your old medical records were sent to your new doctors. You would think they could refer and see that you need more cortisone to cover you for procedures. Heck, I always ended up on cortisone after my kids got married from the stress.
As far as the infection, you make sure that you tell the doc that you know this is serious and make her do xrays to check to see if infection is in the bone. I can't believe she sent you home without antibiotics when you have autoimmune issues. Also, sorry to say, kids can have sjogrens also. It is sometimes hard to tell with them as you know how with kids everything shows up a little differently.
Hopefully you can get moved to a better area where it will be easier for you. It really does get a person down in the dumps when they don't feel good enough to get out and meet people. Plus, when we are up and about we frequently don't feel like making small talk. So many things don't seem to warrant conversation after dealing with chronic illness. I will continue to keep you in my prayers. Irish ;D
Rosie, I so understand how you are feeling. I, too, am so ready to give up. I cannot find a doctor who can/will help me. I have spent tens of thousands of my "retirement money" on my teeth, and it just goes on. Scheduled now for two root canaled teeth extractions and implants. I have so many problems in my mouth, of the kind the dentists and doctors can't seem to see, that I have nightmares about tongue cancer and such. Went to a new dentist and he said he could help me with the mouth dryness and told me about the sugarless candies, gum, etc., and I didn't have the heart to tell him that I no doubt know more than he about that stuff. I just can't understand the lack of medical care for sjogrens patients. The sweats posted here are something I go through also and people think I'm "going through menopause," when menopouse happened to me so long ago I've forgotten it, but I know it was nothing like these sweats. In fact, I have just about all the Sjorens repercusions that people talk about on this website. Anyway, Rosie, just wanted to let you know that there are others at their wits end, and this is about the only place one can vent and be understood. Thank Goodness for the website.
Dixie
Rosie-
I just wanted to pop in and tell you that Iyou and your dear son are in my prayers.
Hang in there and know that there's always someone here to listen,
Tracy