Author Topic: Time for a new Rheumatologist ?  (Read 916 times)

bmonahan

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Time for a new Rheumatologist ?
« on: December 11, 2018, 04:41:42 PM »
Hello, I was diagnosed with Sjogren's 7 years' ago. Since then I have progressively worsened over time. I WAS working as an Registered Nurse up until last March when my health hit rock bottom and I walked away from a 15 year job. My symptoms are all over bilateral joint pain. Especially in my feet, hands, hips and knee's. The pain is with me EVERYDAY, I also have fatigue everyday that can be so bad that at times I feel like my body is sealed to the bed like molten lava.

I also have severe dry eye which causes me blurry vision daily. I have brain fog and had been making many errors when I was working. In addition I have had peripheral neuropathy in both feet and hands. Burning in feet, tingling in feet and hands. About a year ago my Rheumatologist added fibromyalgia because of sharp stabbing pains in my muscles and insomnia along with restless legs.

I am almost 50. There is no doubt I am depressed over the impact of these symptoms have had on my life. I filed for social security disability. My pcp is wonderful, but my rheumatologist ( had her for 7 years, constantly talks over me) I had a follow up with her today to inform her that I am still struggling with pain and fatigue. She is now saying that I don't have Fibromyalgia because the fatigue comes and goes it's not everyday.  She also said she does not think the fatigue is from Sjogren's either. 


She thinks I need to go see a psychiatrist. I started falling apart and crying.  I am depressed and see a counselor, but I don't think what I am feeling is in my head. My husband can attest to seeing me walk on my feet when they feel like they are broken. I am so upset at her.


I take Ibuprofen 600 mg 2-3 times a day, which does help some. Prednisone 5 mg daily, Lyrica 300 mg, Imuran 100 mg, Lexapro 20 mg, Xiidra eye drops, and tons of over the counter meds for dryness along with vitamins.


I went for a second EMG last week which was negative for large fiber neuropathy. What I read is that Sjogren's is usually small fiber.  Has anyone else felt like when their doctor couldn't "fix" the problem, it was deemed in your head.  Is it even possible to be able to do this?  My blood work is always leukopenia, but since diagnosed, my sed rate was never elevated. I was positive "high titer" for Rheumatoid factor too. So she thinks there has to be a psych component.


I was denied my first go around for disability, I have hired a lawyer and am now waiting for a hearing.


Thank you so much for any advice
Barbara
Sjogren's, Sicca, mixed connective tissue disease, fibromyalgia
symptoms- dry eyes, mouth, nose, fatigue, Joint pain,  peripheral neuropathy

Joe S.

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Re: Time for a new Rheumatologist ?
« Reply #1 on: December 11, 2018, 10:13:12 PM »
I see that you are already on an antidepressant. You may need a shrink to help you get disability and manage symptoms. Basically you have to list everything on disability and it has to fit their numbered definitions. There are some on the forum that have gotten it on their own that may beable to help you.

If you have read my posts you know that I follow a non-typical treatment of this disease. I gave up on Rheumies a long time ago and work with a GP. You can check my signature to see some of what I am taking. There are a number of things that i take for Arthritis and a couple for sjogrens that seem to help.
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araminta

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Re: Time for a new Rheumatologist ?
« Reply #2 on: December 12, 2018, 02:42:49 AM »
I am in the UK so can't advise about disability help.   However I wanted to say that I perfectly understand your feeling of being disbelieved.   The rheumatologist I saw wrote to my doctor that I "looked well" (presumably because I didn't crawl into the hospital on my hands and knees), and I think because my blood work was negative they probably thought I was just stressed or neurotic.

The trouble is that this thing does come and go a bit, some days we can cope and not feel too bad, other days we feel terrible.   Some doctors seem to have great difficulty understanding the nature of the illness.   

I must say I don't understand how you can have a diagnosis of Sjogrens and still be told the symptoms of pain an fatigue are in your head.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

eye2dry

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Re: Time for a new Rheumatologist ?
« Reply #3 on: December 12, 2018, 10:00:54 AM »
Hi there.
I was a LPN for 20 years when dx with RA and Sjogrens in 2010. I had positive labs for RA and Sjogrens.
My eyes were inflamed, dry sensitive to light,blurry vision. My joints hurt even while on MTX and Plaquenil and
Occasional cortisone injection to hip and wrist. The fatigue was overwhelming. I was forgetful and lose concentration.
Etc....etc....

In 2015 I had a really bad day and verbally exploded and quit. I filed for SSDI on my own, I was examined by a physician and had a nice visit with a psychologist that they sent me to. I was approved first time around  and started getting my SSDI 3 months later.

I miss my job and I was good at it, the Patients liked me....I loved them.

On my forms I filled out.....I feel the most helpful thing for me is to tell them the truth.......the most horrible truth was
I felt like I was unsafe. I should not be drawing up or mixing up injectables, calling in or writing RXS or numbing
Areas around the eyes...etc. My hands were not able to suture any more...took forever and I was always afraid
I would drop instruments in their eyes/face. I got to the point I could barely see the fine suture thread.
On and on I could go.

I wrote I slept on my lunch breaks, I wore sunglasses at work but obviously had to take them off when assisting the Dr. In surgery. I wrote I have slept 16 to 18 hours at a stretch without moving....my husband came in a time or two to
See if I was alive.

My eye dr tried may RXS and sent me to there specialist for help. I had tear ducts sealed shut.

Document every little thing.
In my opinion drs get frustrated (not all, some) and it's easier to throw them off to a psychiatrist. In the beginning way way back, I presented my GPS with my symptoms and he prescribed anti depressant for me . No labs for fatigue or joint pain back then.

Hope some of my above info can help you.
Good luck.

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

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jazzlover

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Re: Time for a new Rheumatologist ?
« Reply #4 on: December 12, 2018, 04:07:53 PM »
I'm sorry you are so miserable! Have you been thoroughly checked for Lyme disease? I would be sure to get tested through Igenex Lab.

As for the psychiatrist .. GO. They can HELP you get disability. They can verify that you are not crazy. I had sessions with our counselor-qualified minister when I was trying to get on disability. He wrote something about how I was unable to cope with all of the medical problems I had/have. So he was a help, I'm sure.

Yes, find another rheumatologist. I hope you live in a big city. We have very few in our area and the ones we have are not worth much. I gave up trying to see one.

Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Carolina

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Re: Time for a new Rheumatologist ?
« Reply #5 on: December 13, 2018, 06:18:20 AM »
Dear bmonahan,
 
I'm sorry you are suffering so.  Your symptoms match mine, but I didn't begin this journey until I was 62 and had already retired. It is a 'blessing' that I wasn't afflicted earlier.

Your doctor is WRONG.  I never had ANY positive test results for Sjogren's, because I have an Immune Disorder which doesn't show up on tests for autoimmune disorders, bmonahan.   I have Primary Immune Deficiency, which in my case includes the fact that my Immune System attacks my body exactly the way that Sjogren's does.  But I do not have SJOGREN'S, and is NOT ALL IN MY HEAD, thank you very much!

I had resigned myself to having no diagnosis and seeking treatment only for my symptoms.  But finally, at age 72, I was diagnosed with Primary Immune Deficiency, which is extremely rare (1 in 50,000-100,000). 

Now I am treated for my Immune Deficiency, and while I am severely disabled (profound Peripheral Neuropathy has me walking with braces and a walker now, and I have a long list of other conditions).  I would not have found relief with the Immune-suppressants prescribed for Sjogren's because my Immune System is actually Deficient, not 'over active' in the way that produces auto-antibodies.

Please do see a psychiatrist for help.  At the very least because it helps to have support to deal with what you are going through.  In addition, a good psychiatrist will be able to validate your experiences, and help you deal with your other doctors. 

I have had psychiatric/psychological support since I was 30, so for over 46 years.  It makes all the difference.  I see it as a necessary form of self care. 

Most of the antidepressants also help with pain.  Long ago I realized that I needed one or another antidepressant because antidepressants provide pain relief.  One topic for discussion with a psychiatrist would be exploring which antidepressant can give you relief from both emotional and physical pain.

Of course, emotional pain stems from your physical brain.  Everything we are is physical in nature.

I was prescribed Low Dose Naltrexone beginning a year ago, which provides important pain relief, without damaging my gastro-intestinal system the way Ibuprofen does.   LDN is prescribed by my Pain Management physician at Duke Medical Center.

We are so disabled by our Immune Disorder, bmonahan, and we wind up with a 'laundry list' of medical professionals to help us cope. 

Now my neuropathy has spread to my gastrointestinal system, so I need help from a gastroenterology team.  This past year I have had minor surgery for one gastric problem, and testing, diagnosis, and an course of antibiotics for another.  It is truly challenging to manage it all.

You are HERE in this marvelous Forum, the one place I have found the information, support and validation that has gotten me through the past 10 years.

Welcome, bmonahan.  We are here for you.

Regards, Elaine


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irish

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Re: Time for a new Rheumatologist ?
« Reply #6 on: December 13, 2018, 09:03:28 PM »
I am an old RN who has been having symptoms since 1964 and didn't get diagnosed with
Sjogrens til 2003. Diagnosed with Bullous Pemphigoid in 2002 and Myasthenia gravis in 2006 along with Hashimotos and severely low t-cells. All those years up to diagnosis I had so many health issues and a couple of times had to take leaves of absence from work for up to 4 months. I really can't remember not dealing with illness all those years. I always said that I got more work done sick than a lot of people do well.

Anyway, your rheumy needs to see a psychiatrist. She doesn't have a clue. I can't believe that she hasn't put you on Plaquenil for your fatigue and aching. Also, it is wise not to take NSAIDS when you are on Prednisone as the 2 meds can cause bleeding. Tylenol works well for a lot of people. I am going to be aggressive and tell you that you are suffering way too much. I would find another rheumatologist or an immunologist. You probably would do well to be on Methotrexate or Cellcept which are immune suppressants. I am on IVIG for my myasthenia plus prednisone, Plaquenil and just started cellcept and so far it has not bothered me with nausea or anything. My son is on cellcept also and he is doing some better. Cellcept knocks down the antibodies and we should have more energy and ache less plus miscellaneous stuff plus my immunologist says it helps with the neuropathy also.

There is always a chance that with medications you could live a more normal life and even be able to work some. However, when we get so sick it seems to take our body awhile to recover.
Sounds like you are in a big flare. It is also possible that you have more autoimmune and need more testing. Also, you would probably do well to see a psych and be put on antidepressants as autoimmune diseases and other chronic diseases are responsible for a lot of depression . I told my immunologist that I was on antidepressants and he said , "you should be, you have been sick for 40 years". I have been on antidepressant for many, many years and it they saved me. These meds help us sleep better and believe it or not, they help us cope with pain better and also it is thought that the antidepressants change the pain receptors in our brain so that we don't suffer as much.

I haven't worked since 2003 and have now added autoimmune ear disease to the list. Please have hope and find a doctor or 2 who will help you. Also, be aware that autoimmune diseases causes tendonitis all over the body. I have a lot of pain in arms and hands and have lost a lot of feeling in my hands. I have had 3 carpal tunnel and ulnar nerve decompression and need one more. Inflammation just raises havoc with the tendons. Hang in there cause there is help out there. It takes energy to get to these appointments but for some reason our body will shoot out a little adrenalin when we need it to get through an appointment. Find an advocate to go with you and help you fight for treatment. Good luck. Irish  Keep us updated please.

bmonahan

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Re: Time for a new Rheumatologist ?
« Reply #7 on: December 16, 2018, 04:11:47 PM »
Thank you to all who replied. It makes me sad to see so many suffer with this disease. I would like to clear up a couple things.
I do see a counselor for depression, and take 20 mg of Lexapro. I will definitely go see a psychiatrist if we can find one. I used to be on plaquenil ( 5 years) but my Rhuematolgist took me off of it and put me on Imuran. Since being on the Imuran, my white blood cell count has gone up to normal. Because my blood work recently came back normal, the doctor thinks I am in major depression

My seed rate always comes back normal. The joint pain is in both feet, hands, elbows, knees and hips. I also have burning, tingling, with occasional stabbing pains in my feet and hands. The fatigue varies, but to some degree is every day.
My eyes hurt, dry, gritty and cause chronic blurring.
I do have a supportive husband and friends. Thanks everyone.
Barbara
Sjogren's, Sicca, mixed connective tissue disease, fibromyalgia
symptoms- dry eyes, mouth, nose, fatigue, Joint pain,  peripheral neuropathy

Carolina

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Re: Time for a new Rheumatologist ?
« Reply #8 on: December 17, 2018, 06:50:39 AM »
Hi Barbara,

Thanks for the additional information.  It is good to get to know you better, and to know all of the ways in which you have cared for yourself, and the help you have gotten from Imuran, which in your case has been more effective than Plaquenil.

I know that the joint pain and the burning,,tingling stabbing pains are exhausting.  Even with lots of good  medications, I still have this, and it is chronic, which means that no matter what I do, this won't get better.

I have the fatigue, which just doesn't get better no matter how I sleep and rest.  Again, this is difficult because I think we all expect that if we do the 'right things' we will see improvement.

My eyes also hurt like yours.

Barbara, I believe that our entire culture sends the message, constantly, that if we have a problem, we can fix it if we try hard enough.  If we still have problems, we must have failed in some way.

We have not failed, Barbara.  It is very hard for me to incorporate my conditions into my reality.  I just don't want to accept 'the new me'. 
 
Somehow I have to accept what I am now, while continuing to care for myself and seek any help I may need.

There is a book, "How to Be Sick", by Toni Bernhard. It is marvelous, because she was blind sided by a chronic condition, thought she could find a way to stop it, and finally learned many techniques for learning and practicing how to live with her illness.   It changed my life, literally.

The reality of living with a chronic condition is that each day is a new lesson in acceptance.

The very first lesson is that there isn't anything 'wrong' with me.  This is the fact of my life.  There is beauty and joy around me which I can see more clearly once I accept my life as it is.

And I can find joy in the happiness of others, the fact that they can do things that I cannot, that they can find pleasure in being together, even when I cannot join them.

Today I am struggling with the disorder around me  Piles of clothing and papers in my bedroom, clutter on my bedside table.  Then It will take effort and some discomfort to for me to put things in their proper places.  And to accept that clutter will return!  That is a cycle, and I can't stop clutter from occurring, because I don't have the energy and I'm not the only one in this house!

My husband has a much higher tolerance for clutter than I do, and his areas of the house are very messy by my standards.

The clutter bothers me more right now because on Wednesday the cleaning service comes, and I am ashamed if there is clutter when they are trying to clean.  My shame is causing me emotional pain and I'm two days away from Wednesday, and already fearing that I won't meet my own unrealistic standards for myself.  I do this to myself all of the time.

My way of thinking has to change, just as it has to change with how I see myself as 'broken' and in need of fixing.

Well, I am rambling.  But that is part of the joy of this forum.  It allows me to share myself and learn about myself in the process.

Again, Barbara, thank you for sharing and for joining us.

Regards, Elaine
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irish

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Re: Time for a new Rheumatologist ?
« Reply #9 on: December 18, 2018, 09:01:02 PM »
bmonahan, I hope I didn't offend you with my rapid fire post earlier. I have gotten to be more direct in my later years and that is even worse since I got some miserable neuropathy in my finger tips. It hurts to keystroke so I tend to "talk" and type fast to get done as fast as I can.

I find it interesting that your doc thinks your depression is worse since your white count is normal. I don't understand the relationship so maybe this is something I have missed in research all these years. It always seems like the bad times will last forever but thankfully we all seem to have a little reprieve at times. It helps if we even have a day where the pain is less and we feel more normal.

Mostly it sounds like you have a lot of pain and issues and I can relate to that. I hope that you can get to feeling better. There is always the possibility that one can try a different medication. I just started on Cellcept about 3 weeks ago and this med affects the t-cells and according to my immunologist should help my aching, weakness and other issues plus the neuropathy. I wait patiently cause it takes months for these meds to kick in.

Have a good Christmas and don't wear yourself out. I say that cause no matter how terrible we feel we women always manage to get involved in the kitchen at this time of year. We just can't help it but we pay dearly for it. Take care. Irish

vrystaat

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Re: Time for a new Rheumatologist ?
« Reply #10 on: December 18, 2018, 09:07:11 PM »
I wasn't diagnosed with Sjögren's Syndrome for 10 years, even though I had obvious symptoms. I started out with Neurological symptoms, but also had severe fatigue and dry eye/mouth.
I was seen by the best academic Professors, and none had a clue. So I self-diagnosed. What disappoints me the most with Rheumatologists is:
- Their lack of understanding of our suffering
- Their lack of being able to help us with the simplest things:
   Such as how to treat cracks at the edge of our lips (Angular cheilitis) {Try Triderm and a protective barrier cream such as CeraVe Healing Ointment }
   Helping us with fatigue (for example prescribing Provigil or Adderall. Getting both of these are huge uphill battles.
   No help with my severe Sjögren's Fog (no I don't have Alzheimer's).
   Lack of help & guidance for the severe depression a lot of us have.
- Lack of facilities for intravenous drugs. { This is the hardest aspect for me, because I need IVIG frequently. I have had 3 or 4 refer me to some Company, which is plainly in it for profit.
  Another reason is that most hospitals require the MD to have Staff Privileges to use their Outpatient Infusion Service. Most Rheumatologists don't want to be on Staff at a hospital.
  My solution has been to ask the local Cancer Group whether I can use their IV Lab. Most agree, but it's like pulling teeth.}

What I've often done is to educate my own GP, who helps with most of the drugs.

Have a lovely Christmas
« Last Edit: December 21, 2018, 12:39:56 PM by vrystaat »
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

irish

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Re: Time for a new Rheumatologist ?
« Reply #11 on: December 18, 2018, 09:24:37 PM »
Some of the problem with our doctors is that they aren't given much training on autoimmune diseases I think the training schools would do well to have a doctor or nurse who have autoimmune disease run classess for a set number of hours concerning the hard time it is getting diagnosed and how to handle it. Also, talk on the many problems such as the dry lips, sides of mouth, persistant oral yeast, and the issues that plague most of us at one time or another.

The doctors also need to know when to start looking for autoimmune. Doesn't take all that long really. What is amounts to is most of us doctor with one problem or another and are given treatment and nothing happens...no improvement. Seems like at some point autoimmune should be another differential diagnosis until proven negative.

Another thing to be aware of is that many times docs don't see many autoimmune as they will be seen in the training schools. Many times they will only run across an autoimmune patient when they see them in ER or Urgent care when they come in in really b ad shape with something like kidney failure, dehydration needing IV's, etc. This is an entirely different picture of autoimmune and something that is hard to relate to the chronically ill autoimmune that show up in their office.

So many of us have figured it out before the docs because after all this time doctoring with no help we google ourselves silly and low and behold, there we are hovering in the page of some research articlee. Same symptoms as we have and a name for it too. It is very hard to be patient.....I waited 39 years to get Sjogrens diagnosis. REally pathetic isn't it. By then I had lost most of my teeth. Duh. You would think that would ring a bell.

We just have to have patience and support of friends and relatives. Take an advocate with you to the doctor so that you have someone to help you fight for diagnosis or another doctor. TAke care all and Have Blessed Holidays. Irish




Kathy57

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Re: Time for a new Rheumatologist ?
« Reply #12 on: December 24, 2018, 02:15:26 PM »
I am angry at your Rheumatologist for insinuating that your medical conditions are in your head!  I had some doctors tell me that too.  How can anyone begin to help you if they don?t believe you?

I think it is time for you to find a better Rheumatlogist although this may be harder than it sounds.  Hang on to your current Rheumatologist until you have a better one.  You deserve better than this, but it is too common for doctors to just dismiss this.

I have no experience with disability but have been told that being denied the first time around is not unusual.  I think you were very smart to hire a lawyer.  I too am a nurse and before I was diagnosed I felt so sick that I quit my job.  I had no diagnoses at the time and was treated ignorantly by my doctors.

Don?t give up.  I have better doctors now.  Be good to yourself.  Rest.  Merry Christmas and look forward to a better New Year.  You can handle this.

Kathy

« Last Edit: December 24, 2018, 02:54:58 PM by Kathy57 »
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

bmonahan

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Re: Time for a new Rheumatologist ?
« Reply #13 on: December 30, 2018, 07:53:50 AM »
Thanks all for the encouragement. I have found a new Rheumatologist ( will have to travel 45 minutes) I did some research and found someone who seems highly recommended and loved by patients. It wasn't easy though, I chose 3 others before her, and none were taking new patients.

I am encouraged about all the records she is requesting from me. I will see her early March. I am hopeful, it will be a good fit.

I also found myself a psychiatrist that is local. Again, my current Rhuematolgist did nothing to help me find a psychiatrist. I did it on my own. I have an appointment next week.

I posted today, that I am doing a 28 day cleanse with Arbonne. I am hopeful that this will give me some much needed energy. I do drink coffee and wine, which I will stop on Tuesday. I know I will withdraw from those two things.

Lastly, I see some of you also see an immunologist. Would I benefit from that? Do they have a broader knowledge of Sjogy?
Thanks and Happy New year!
Barbara
Sjogren's, Sicca, mixed connective tissue disease, fibromyalgia
symptoms- dry eyes, mouth, nose, fatigue, Joint pain,  peripheral neuropathy