Hi willows4u,
what a nightmare time you have had........ so sorry to hear about your unsympathetic docs. I have tried many pain drugs over the years and non have done it for me either and in most cases the side effects have outweighed the benifits.
I took myself off everything in the end so I could get back to the real problem. Its not going to help the pain but it makes you feel in control and allows your body to detox a bit. Now I have pain killers as and when I am desperate and an emergency morphine bottle for when my
shoulders freeze!
Hopefully your doctor just had an off day but dont let him make you feel like you are not important because you really are......hugs.

Oh,my! How dreadful for you. It is so upsetting when the doctors we trust with our very lives disappoint us. It sounds as if he is over-worked. You've invested a lot in him, and perhaps you feel he doesn't really know you, after all. His remark sounds to me as if he was feeling overwhelmed, and your innocent question set him off. But do you really want to go to a doctor who has no time for you in his schedule? Asking a previous patient to wait 3-4 months is just wrong. Perhaps a newer doctor or a PA would be able to give you the attention you deserve? Too, a lot of us don't speak up enough for ourselves. When it comes to pain,especially, you need to pretty much be in tears.
Now, one last thing, I hope you are not really serious about stopping all your meds to spite the doctor, and see what happens. You could die! Rather an extreme choice, eh? ::smile::

Sorry you are having such pain and other challenges. Be well. Huggzzzz

I see my rheumy every three months but if something comes up in between I just call and say I need more pain killer, prednisone or whatever and she call it in to the pharmacy. Oftentimes it will be her nurse who talks to me. Have you tried that?

Best of luck to you. Kat

Thank you for the responses.
Since having my third baby almost 5 years ago, my body and deases have gotten totally out of control. I have pain in my fingers, wrists, elbows, knees, ankles and feet. Sometimes my joints lock up and there is nothing I can do to unlock them but wait a few minutes for them to unlock on their own. I also have horrible edema in my legs and arms as well as a swollen abdomen. My newest symptoms are muscle spasms. Sometimes it is the right side of my face. Sometimes my left thigh. I also have issues with my nervous system where I feel like I am being electrocuted down my arms and legs.
I should mention that I still work full time (pretty much because I have no choice...I make the money in my family). I am exhausted constantly.
My medicine cabinet looks like it belongs to a 90 year old!!! I am on Synthroid, Lisinopril, Methotrexate, Vitamin D, Folic Acid, Prednisone, and Metformin. I also have a bottle of Vicodin for pain but I try not to take it because I fear not being able to wake up if my kids need me. I also worry about becomming addicted and losing my nursing lisence!!
So I sit here wondering if some of the new symptoms are because I am on so many medications and they are reacting with each other or if I am just progressing that quickly.
It took a lot for me to ask my doctor for a handicap pplacard for my van so I don't have to walk so far. He finally gave in and I got one. I try not to use it that often but when I go to work I use it because I don't want to have to walk to the other side of the hospital where employees have to park after working an exhausting shift.
I have short term and long term disability at work but have been trying to avoid going on it because I feel like the disease has won if I do.
So I have an appointment with him in a couple weeks and I am afraid to mention my problems because I am afraid that they will fall on unsympathetic ears and I will leave there feeling alone and disregarded again.

Willows4j,

It does get tiresome to need so many different specialists, but let me encourage you that it does get better.

I had to see a urologist to diagnose interstitial cystitis in 1998, and he treated me with Elmiron, which did help a lot. I've never had to see him again.

I saw a dry eye specialist to get the punctal plugs in my lower eye lids but don't need him now.

I did have more than one consult with an ENT specialist when they were trying to figure out my Hashimoto's and swallowing difficulties. After I made the switch to Armour thyroid, my PC doctor sent me again and the ENT confirmed that finally my nodules had shrunk and that I should stick with Armour instead of Synthroid. The original diagnosis of Hashimoto's was confirmed with an endocrinologist who I saw over a period of six months and then I was released.

I saw the gastroenterologist to diagnose GERD in 2001. When I didn't respond in a month as he thought I should, he checked my gallbladder and sure enough I had stones. I've never seen the guy again, and after several years of therapy with Nexium at that time, my GERD is mostly under control.

I was sent to another gastroenterologist for a colonoscopy after my sister had multiple polyps removed. Not fun, to be sure, but he confirmed my IBS and gave me a clean bill of health. I'd rather know for sure than wonder since my grandmother lost 3 feet of her colon to cancer back in the 1950's. We didn't know about it until my sister's experience and it was her doctor who encouraged the other siblings to be checked out.

Two years ago I saw another ENT because of frequent sinus infections brought on by Sjogren's-related dryness and inflammation. He started me on Neil Med Sinus Rinse twice a day and I've been in good shape ever since.

I still have eye exams and retinal photography every year (was twice a year when I took Plaquenil.)

Also have allergy shots to try and control my severe environmental allergies, which means seeing the allergist for testing every several years

This year I'm having a pulmonary workup to improve asthma management since I am super allergic to the new HFA inhalers. I thought it might be the propellant but he feels that it is the preservative. I have one more test to complete in this evaluation. So far my test results are very encouraging and my lungs seem to still be on my side which is good to know.

If you can spend less time chafing with the need to see other specialists from time to time, and realize that even without Sjogren's there are some specialists who are necessary. In the meantime, you don't have to stick with a rheumy who is rude and disagreeable.

My first two rheumies back in 1998 were useless on living with Sjogren's. It wasn't until 2004 that I went out of my HMO network and saw a rheumy who does Sjogren's research. He treated my PN & Fibro and continues to keep me in better shape than I've been in years. Identifying the problems and finding ways to treat them has been a very good thing in the long run. I wouldn't go back to how I felt in 1998 for anything.

Best of luck!

Hi willows4u. I liked everyone's comments on this topic. When I first started having problems (my body went into freak out mode after multiple deaths in my close family), it seemed I saw every kind of doctor there was. But like DryRDH, I've been able to elliminate some doctors after I got some correct DX'ing. This didn't happen over night, but was able to get into a routine that worked for me, with medications, my activity level and work. I never thought I would be able to feel good again and I couldn't understand what was wrong that I could look so fine outside and feel completely awful everywhere.

It's been nearly two years since I first got sick, however I am like a lot of people and this was all coming on for years and finally with the stress, my body couldn't take any more. Be positive though, because it can get better. I managed to keep working full time and I can keep up most days with my family. When I have a flare or feel bad, well then I just have to take some time to rest in bed and let myself take a break.

I hope you feel better soon and get setteled in with regular doctors that you are comfortable with.

Have a nice day.

I understand how you feel about your Rhuemy's comment to you as there have been times that mine has said some things to me that I wish he hadn't, but I still wouldn't change him for what I had before. The first two Rhuemys I went to never even tested me for anything and just assumed what I had. You are always going to be involved with other specialists simply because you have Sjogrens. Your Rhuemy cannot handle it all by himself. There are just too many issues and different ways of treating different problems. Also, about the Vicodin ask your Rhuemy's office about Tramadol. This is a pain med which you can take up to 8 a day and does not put you in la la land. I also recently found out about Volteran Gel (It is a topical anti inflammatory). I called his office and got a prescription. I also take valium for balance issues and anxiety. Again, I just call his office for prescriptions. I have also gone to urgent care with urgent issues if I couldn't get in to see him. You have lots of options you just need to find the ones that will work for you. I am not on any treatment for the Sjogrens but seem to manage with what I am doing. However, going off your meds should be discussed with your doctor first and no you probably shouldn't be on them if they are not helping you. It is just adding more toxins to your body.

Good luck............

I agree if you don't have major organ involvement and your pain is not being relieved by the Methotrexate I wouldn't stay on it either. I refuse to be on that med unless its absolutely necessary. Unless the risks outweigh the benefits, I would get off of it too. I can't blame you there. Yes it can save your life in certain circumstances, but not for the kidneys. It is mostly used to treat the joints.

brain fog, unless the benefits outweigh the risks I should say..