Questioning everything

General
1

So, I need some thoughts. I went to see that new rheumy to hopefully start Enbrel. The MTX and celebrex weren't cutting it so much. Went off the MTX about 6-8 weeks before this appt. Then I realized how much the MTX was actually helping. I was in agony.

So anyhoo, met the new rheumy. She was awful as far as personality goes but I am a nurse are realize that some of the best docs suck as far as social skills go. She does a very crappy exam. Has a script of questions and does not allow me to add anything.

She explains to me I have fibromyaligia. She wants a biopsy of my itchy, scabby areas on my scalp to determine if they are in fact psoriasis. She wants to re-do all the arthritis testing, which i have had done numerous times (all neg), and do xrays, which I have had done as well.

I did add that the pain migrates to different joints, they become warm and puffy and I was having a flare in my shoulder at that time and could not lift it. She said it was tendonitis. I asked her how did I get tendonitis without doing anything? She didn't know. I told her I had a lot of relief with prednisone, she said everyone feels better on prednisone. But my doc back then said fibromyalgia does not normally respond to MTX and NSAIDS. I walked out.

1. I'm not paying for all the testing she wants, been there done that.

2. Already took the fibromyalgia road, tried all the meds, they never helped.

3. As soon as put on NSAIDS, prednisone, and MTX I was getting relief.

4. I've been telling people for years that my sx don't fit fibromyalgia.

5. My sx: Migrating joint pain. Feet kill me, especially toes and achilles tendon. Spine is very painful, especially lower back. My joints pop and crack and more so if there is a flare there. In fact I was told my joints are hyper mobile (was told i do not have Erlers (whatchamajigger) Syndrome). Extreme fatigue. Excercise induces flares. Xrays and bone scan show arthritis to ankles, feet, knees, spine (mainly all facet joints), shoulders, elbows. I don't ever have a sed rate higher than 11. RA-, ANA-, Lymes-, CRP (never tested). and yes, i have tenderness to tissue surrounding the joints. Also have intercostal rib pain.

6. I would accept that maybe I have fibro with something else, but I am convinced that fibro is not the lone cause of my sx.

So, any thoughts? I am depressed and feel hopeless about ever feeling better. I am 40 and I've been dealing with since age 17. I am getting worse. To the point that working makes me cry. Am I on the wrong track or is the Doc that dx'd me on the right track? I just don't know who to trust anymore.

I recently cut way back on carbs and restarted my doxycycline, both help some. Still on Celebrex but only use it when I work or if miserable.

Please any thoughts as to what direction I should go?

2

I don’t have any suggestions for you. I am a bit puzzled why the tendonitis in your shoulder baffled the rheumy. Tendonitis is a common issue in PsA (and other autoimmune diseases). In fact, it’s my main problem. I wake up and have a random joint that’s immobile for a few days due to tendonitis. I was dx by two rheumy’s (wanted a second opinion) about 15 years ago.

The rhuemy (who i got the second opinion from) is now questioning my dx as well. Primarily because I also have ITP (autoimmune destruction of platelets), started having positive ANA tests and never developed psoriasis (although i also have a scaly rash on my scalp that comes and goes but has never been dx). I’m just waiting on the results of a battery of tests, but they are now leaning towards a Lupus dx.

This is what i was told most recently concerning my dx: PsA and Lupus are both generally non-erosive arthritis’s (there are always exceptions to the rules though). So they look very similar in the beginning on Xrays. When initially dx’ed (through xrays and a bone scan), I did not have enough criteria for a Lupus dx, had a very strong family history of psoriasis/PsA (grandfather had PsA, oldest daughter had psoriasis and youngest daughter had severe pustular psoriasis) and I had some very minor pitting on one fingernail. Over the years, I have developed one more Lupus dx criteria (positive ANA). You need 4 criteria for Lupus dx and I have 3 (non-erosive arthritis, ITP & positive ANA). So now they need to re-evaluate my dx and run further tests to see if I have a forth. I also developed arthritis in my sacroilliac joints which is uncommon in Lupus but common in PsA. So they are also running the HLA B27 test and trying to determine if the arthritis there is inflammatory or degenerative with an MRI. It can be very complicated getting a dx when you have overlapping symptoms (Fibro would probably complicate your dx as well).

Why are they questioning your dx? Has something changed? Can you have your old rheumy (who dx’ed the PsA) forward those test results to the new rheumy so you don’t have to re-do all the tests? They may still want more tests to see how the disease has progressed (which can sometimes help with a dx).

The most import thing is getting relief from your symptoms. If this new doctor isn’t willing to help get things under control for you, you may need to find a different one. I hope you Get some answers soon.

3

yes i would go elsewhere.... please don't wait to long you don.t want any more perm. damage done

4

Silly question here, but are you able to go to a different rheumy? I've also been dealing with this since I was in my teens. I'm 45 now and I was only dx'd with psa a year ago. Your symptoms sound very, very similar to mine. Too me, it sounds like the doc who dx'd you with psa is on the right track especially since you had a positive response to mtx, celebrex and prednisone. You did the right thing walking out on the new doc.

5

I know what you are going through. My first Rheumy diagnosed me with Fibro too. I was on Voltarin for my knee pain and he took me off that and started me on Trazadone and Neurontin at night. That helped me sleep but nothing else. I then went into a flare so bad that I could barely roll out of bed and I couldn't move either of my arms well enough to put a coat on. I had to scoot out of a chair to get get out of it. My neck was so stiff, I had to turn in my chair to look to the side. When I went back to see him, he then thought I had Polymyalgia Rheumatica and gave me a steroid shot. I felt so much better the next day, I thought it was a miracle!! That was key - steroids do not help with Fibromyalgia. He also started me on MTX. But a few months later, the steroids were not keeping up with the disease and he suggested I start Enbrel without giving a further diagnosis. Then I switched to one of the most well respected Rheumy's in my area. He does not take insurance so I have to pay first and file myself and he is expensive ($150 a visit). He saw me the first time for an hour ($300 for the initial visit) and took notes and had me come back after he went over my labs, x-rays, etc. He diagnosed me with PsA and started me on Enbrel anyway! (I guess my first Rheumy was on to something after all and in his defense, I had not told him I had Psoriasis) The Enbrel didn't work so well so I switched to Humira. I am still on MTX but off the steroids (finally) and am doing much better.

I also see a Neurologist because I have Peripheral Neuropathy which I take Lyrica for. It really helps.

I think you need to find a Rheumy who will listen to you. Even if it comes at a higher price, once you have the right diagnosis and treatment, you don't have to go as often. Talk to your PCP about finding someone good, not necessarily someone on your plan.

6

I went to the new Rheumy because i really wanted to try to see if a biologic would be called for and my current rheumy isn't very aggressive. But im going back to him cause at least he doesn't treat me like a rock.

7

Like you said, some docs have zero social skills. Have you tried being a little more assertive with your rheumy?

pippy72 said:

I went to the new Rheumy because i really wanted to try to see if a biologic would be called for and my current rheumy isn't very aggressive. But im going back to him cause at least he doesn't treat me like a rock.

8

You definitely need a new Rheum Dr. I went down this road and actually stuck with the crappy Rheum Dr for years because I just trusted the fact that he was a Dr. The guy always dismissed mewhen I tried to describe the pain I was having, especially in my hands and my feet, and how it was getting progressively worse. My dermatologist was actually the one that made the PsA dx, and sent me to him. For years I took Enbrel and it did work, but when it stopped working this guy didn't offer any other medications, xrays, MRI's - NOTHING. Just told me to continue the Enbrel and take Aleve. Well, I was in agony....crying because I could not sit, stand, sleep, work. So...I took matters into my own hands. I did my own research and found a Rheum Dr. at Northwestern University in Chicago that specializes in PsA. I went and saw him do a lecture at the University (its a teaching hospital) and then called to make an appointment. This Dr is amazing....mind you, I am not "cured" by any means, but his caring attitude made a world of difference - the stress I was under was making me worse and he helps by listening and being willing to make adjustments. He reviewed my medications, sent me for MRIs (which turned out to be REALLY bad in regards to bone destruction). We tried Simponi and Methotrexate along with a prescription pain pill ( I was popping Aleve like they were candy). The Simponi didn't work for me, so about 2 months ago, he put me on Remicade and I still take the Methotrexate. Now, I still have flare ups, but the pain level is nothing like it used to be. I have kept a log rating my pain level each day, and will share this with him on my next appointment. He told me that the Remicade doses could be "tweaked" if necessary, and I will have another MRI to see if the bone destruction is any worse or about the same. Honestly, just his caring nature makes me hurt less if that makes any sense.

9

My rheumy is of the school of "treat what you see". He doesn't care if my tests show fine, if I show up in pain and tell him I'm worse, he discusses which treatments I could try and lets me make the choice to try something new.

I think this new doc is terrible. I have enountered the type before and could never work with them. One even thought I had no arthritis at all! despite 25 yrs of disease and treatment. My advice: find a new doc. Not easy, but I think the doc you saw could cause you more harm. I don't see why you should repeat any tests. Maybe the doc just wants to make a buck.

Best wishes. It's really tough when a doc doesn't listen or trust your own reports of how you feel.

10

I have a great internist and a wonderful dermatologist and.... a horrible rheumy... The Internist who figured out what was wrong with me with the help of the dermy after years of misdiagnosis and damage i see for all my blood work ..yes i have a rheumy who doesnt do any blood work .at all not even when your on MTX shots prednisolon, tramadol, and Hunira all at the same time! He leaves it up to the internist and then they apparently send the information back and fourth which i know for a fact doesnt happen even though their practices are lierally right across the street from each other. Anyway my rheumy rode the fibro train for months until i could take the pain no more my internist not wanting to step on anyones toes waited for the rheumy to go on vacation gave me a referral to sign me into a rheumatology clinic ... last summer they tested everything from a 3-phase bone scan to osteo, 18 x rays and an army of blood work and 9 days later we had a very clear picture that i had some severe damage going on and that i had been forcing myself to keep going because I had been told for so long it was all in my head and now it could no longer be fixed but they would make me comfortable ... okay 2 canes for the days i can walk, an electric wheelchair for the days i can't, aides for opening bottles and jars and all other sorts of helpful house hold items many of them gifts from the clinic who also gave me a huge apology on behalf of every medical personel who did not listen when there was still time to slow down or stop some of this damage. Anyway i do know fibro is a read illness and it affects many people its a horrible thing to have to live with ...but even worse for me was to have that label on my records stopping doctors from even listening to what I had to say and refusing to actually look into the pains i was having. I was given meds for fibro by my rheumy which actually made everything worse ...give a non depressed person an antidepressant and when they become depressed you say see i told you .. ughhhh anyway the rheumy clinic helped give me a clear cut diagnosis of the damage done where and why. The doctors there actually used untrasound on every joint ..it took hours and i was freezing by the time they were done but the chief resident explained to me that with ultrasound they could see how much fluid was in the joints if it was in the right places, how it flowed, and if swelling int he joints was causing build up or blockages, where they found major issues in fluid via untrasound was also where they did fleuroscopy (live x ray) anesthetic and anti-inflammatory cortisone is then slowly injected into the joint (hurts like hell if your joints badly infected but works wonders later). anyway i have moved into writing a rant or biography rather than what i wanted to say ... Fibro is real and awful but doctors sometimes use it to blanket what they can not figure out and that is unfair to patients whos pain results from another sourse. I live in a small farming village in Germany only 1 rheumy and he inherited his fathers practice so i cant change unless i want to travel miniumum of 3 cities away but luckily i have 2 other speciaists who are amazing and when all else fails and things get bad i go back to the Rheuma Klinik (rheumatology hospital) sadly its 5 cities away and their minimum time you stay is 14 days which isnt always easy for this mama but when i need to i know i have a place i can go where they are ready to accept their patients complaints at face value and look for the source. Find a doctor you feel secure with and one who listens ..it isnt always easy but it will make your whole world a better place to live in.

11

You need to find another doctor but until you do keep with the current one. I do not know where you live but where I live it took me 7 months to get into the one I wanted. Until I could get into him, I saw another rhumey who was an eldery guy about to retire.

It is hard to have someone understand your pain. I have asked many doctors why did you become a doctor, it could not all be because of money. Their answer is they want to help people. I proceeded to tell them..help them by also listening. Sometimes you have to go outside of the box and not just by books and journals. Enough of my ranting,,go find another doctor!

12

awesome post! thanks for sharing.

13

All I know is that these responses from your body suggest the Psa type responses.the stuff I read eg Mastering Leptin byByron Richards see fibro as a clogged /worn out metabolism. my best advice is to study the leptin reset programme by Dr Jack Kruse and read the Mastering Leptin book. I would also study the experts in low carb/paleo and use their supplement advice, as well as the thorough approach to gut health outlined by Dr Sarah Myhill on her website and Prof Art Ayers in his Cooling Inflammation blog. It is not overnight- I took several months, but have got to the point where my shoe size has reduced to do reducing inflammation in toes and i wake up without any pain or tiredness. There are some good strategies out there and it has helped me to come completely off meds. all strategies have risks- but I feel much much better and in control. Good luck x

14

I so feel for you!! Keep trying and see a different rheumy!

My symptoms are SO SIMILAR to yours - except the ankles. My GP thought Fibro first as well, but the meds for that didn't help at all. Then I saw the first rheumy who was ABSOLUTELY horrible - looked at my hands and asked a few questions and said "I have no diagnosis for you". That was it!! But then, I saw a new Rheumy one year later, he was thorough and diagnosed me with PsA (although he sometimes still frustrates me, I'll stick with him). He prescribed Celebrex and it helped a lot. I have tried a couple biologics since then but they were no good for me, back to Celebrex for now.

Anyway, I tell you this to give you hope and to encourage you to keep going! You know yourself best and your symptoms sound like PsA to me, although I'm no doctor.


Also, have you tried any natural routes? I got quite a bit of relief after I got tested for foods that make my immune system overactive and cut them out of my diet (for the most part - I cheat a little). It's a little bit of work, but very worth it! My digestion has improved as well! :)

Good luck and take care!

15

Since we go to different specialties, I have learned that EVERY time I get a test done, I ask for the copies of the test and its interpretation. In my hands, I can show it to any doctor that wants to see or asks for more. I am learning also that too much radiation is not good, either. Gee, I sometimes put the disk of the MRI's or xrays into my computer and look at it myself. (call me curious)

If you go back to the lab that did your work and ask for copies of the tests, they might ask you who (dr) is asking for them. I say that I am the patient and I want a copy, and they give it to me for "free", no more questions asked.

I would go to another Dr. with my tests on hand.

16

First, let me say I'm so sorry for your pain. So many of us have been there/done that, and we know how life-changing it is to have pain that doesn't go away. Second, I want to let you know that it's worth it to find a doc who doesn't want you to suffer! I can't believe how many people have bad docs... FIRE them! They are working for YOU, you are not working for THEM! I know that sounds simplistic, because maybe there are people who don't have many options because of insurance/no insurance. But I have crappy insurance and I can't tell you how many docs I've had to fire. Now I have a FANTASTIC rheumy who changes what he does based on what MY goals are. It's MY life, not his...he doesn't have to live in this body! And HE understands that. You have to be assertive WITH a good attitude to get what you want. (Nobody likes a witch, and you definitely won't get what you want if you have a stinky attitude) I know it seems impossible to keep looking for a doc when you are already so fatigued from pain, but it is worth it! This person could change your life! Hoping for better days for you...God bless you!!!