Overwhelmed ... but seeking professional help

So I have been having a difficult time with my Rheumy. I know I need to find another doctor but have been trying to be pragmatic and stay the course until I establish a new residence in another county. When I recently tried to ask a question about other NSAIDs, my rheumy said I was already on the maximum dose. My question was about trying another option. When I tried to redirect, he said none of the medications or biologics work well for PsA. And I thought, what a crappy thing to do someone...you do not want to be bothered with a question so you tell the person it is hopeless!?! This isn't the first such lack of ... let's say professionalism.

Anyhow, I realized I would get no traction in trying to discuss anything further with him. So I have been trying to work with my primary care doc but up to now his response to any question that may in anyway involve my PsA was to ask me when I was seeing my rheumy next & leave it at that. So finally, I told him that according to my rheumy, I have exhausted my treatment options for the PsA & asked him if we could at least try to better manage my symptoms. I told him about how I can only walk a short period before I have to stop due to pain. He started me on tramadol, and that helps. I was able to lose some weight & that seemed to make my PCP more open to working on various issues.

I told my rheumy of problems with my hands and he was dismissive as usual. I get that my treatment plan may not change. But when I recently pulled a copy of my records, I found no mention of any of my complaints for the last 3 or 4 appointments. The latest record said I have no pain and normal range of motion... which isn't true. He uses some sort of software where he checks various boxes and it generates a report. That is what is typically does for the duration of the appointment... just type in the laptop after listening to my heart and lungs.

So I explained my hand numbness and pain to my PCP who referred to an ortho who referred me to a physiatrists. They scheduled a nerve conduction test and a spinal evaluation. I have a basic understanding of the nerve conduction test. The spinal evaluation is a mystery to me.

In addition to that referral, I requested a referral to a psychiatrist as well. I thought I was managing but I recently hit a spell where I hadn't left my room in a week ... & I wasn't sure why.

So I have these two appointments tomorrow and I am suddenly feeling overwhelmed. The rational part of me knows that these are sensible paths to pursue. But I have just been bombarded by so much negativity lately that I am having doubts in myself.

A big part of that seems to come from having a life long friend pull away from me now that I am I'll and struggling. He is a doctor. And he has become more and more avoidant. We never see each other socially anymore despite living fairly close. Our only interactions now are an occasional phone call in which he queries me about my medical situation then is critical of what I do. If I avoid the topic of my illness, which I typically try to do, he just goes on about how busy he is. And the conversation is follows a familiar route ... I ask when we might get together and he tells me how busy he is. I do not even ask anymore. He just recites all of these various urgent priorities he has elderly parents in questionable health (at our age who doesn't), he is SO busy with his job, he desperately needs to buy a new household appliance/car/widget, etc, etc. We saw each other 7 hours last year... only 2 hours this year in January at my insistence. Prior to my diagnosis we hung out often. We travelled together. We talked a lot.

Recently, he diagnosed him self with psoriasis ... based upon a single rash ... and then ... he diagnosed himself with PsA based upon a single episode of ankle pain. I am not a psychologist or a doctor, but I think when someone is avoidant to the point that they tell you they have the same relatively rare condition that you have ... something is seriously amiss.

The rational part of me understands that one cannot expect to get their needs met by someone that is avoidant. But part of me never expected that there would come a time when a life long friend I have known since early childhood and have always been able to talk to would after decades... just opt to no longer be that friend. And tomorrow I have to walk into the office of some stranger and basically pay him to listen... and that just strikes me as very sad.

I just feel emotionally exhausted. I have three appointments over the next few days and I am just in a very weird state where I just cannot seem to rally. Hopefully tomorrow will be a better day.

This is definitely a lot to be going through. You mentioned that PsA is pretty rare. I actually know a few people that have it in my circles of people, and I'm sure there are more. That is rather interesting though, the ease that your doctor friend diagnosed himself. If he weren't your friend, I would suggest maybe he wants to treat you. What's funny is that a podiatrist that I brought my daughter too was VERY interested in finding out more about PsA and my experience with it. Almost the TOO interested type.

It sounds like seeing a therapist is a good idea. Even if you have friends that you can share everything with, they are not impartial, and can't possibly be as helpful if you're running into some serious issues.

As to your medical care, if the doctor won't discuss switching NSAIDs and won't go further with treatment, then you definitely need to seek out a different doctor. I've been on a number of different NSAIDs - my rheumy recognizes that they don't all work the same, and I may need different ones at different times. If the rheumy isn't recording your complaints, you need to keep records. Start by backtracking if you can to those last 3 or 4 appts so that you have it for your next appt.

As to the tramadol, I know that it can be helpful at the moment. But if you need it, you're not being treated correctly. Keep on advocating for yourself!

I know you're not necessarily looking for advice. As always, take what works for you and is helpful, and leave the rest.

Thanks Stoney. Yes I have started seeing a psychiatrist who also hold a PhD in Psychology and am staring some talk therapy. I have to say, it was a refreshing experience to actaully have someone listen. This forum is helpful but not a substitute for face to face conversation. And I realize that I can definitely use some professional guidance. I specifically looked for someone with such qualifications.
My situation is confounded by the fact that I have little support. I live along & had moved to take a job and was just getting reestablished when I was diagnosed. I subsequently lost my job and am on disability.
I failed enbrel and remicade & now take Humira weekly. Was told by my rheumy it is as good as it gets, no more options. Which I realize isn't necessarily true & hence under scores the need to find a new rheumy.
In the mean, I have been trying to advocate for myself. The tramadol is an attempt to address foot and ankle pain taht keep me from walking very much. I am hoping to start regular PT and that the benefits will take hold and maybe alleviate the need for the tramadol.

My friend the doctor is a bit of a mystery to me. I was there for him through some rough times just prior to my diagnosis.

Since my diagnosis, he has been... well, not very available to me. So it is what it is. And I was just very emotionally exhausted.

The good news is that I think the talk therapy will help me a lot. Because while I am trying my best to push forward ... I just reached a point the other night where I just felt so completely and totally drained.

Fortunately, there is this forum :)

Anyhow, I think I am on a slightly better footing today. Thanks again.

Hey Dandylyons,

First--boo to all the crappy stuff with the rheumatologist and your friend the doctor and all the rest of the horribly frustrating part of being chronically sick.

Second--way to go for getting some therapy. I'm a BIG believer. Chronic illness affects every single part of your life and I don't think there are many saints who could endure the personal, physical, emotional, and professional changes that being sick all the time bring to you. This is a massive adjustment and you have to go with it and not fight it. Therapy is one of the only ways to get through it all.

I hope that you're having a better day. Seems like you know your rheumatologist isn't giving you the best advice--for whatever reason. If you're interested, check my blog for a really good book that might help you with some coping skills. Cheers!

Just want to say…well done you for getting help although it sounds as if it would be all too easy for you to curl in to a ball and hibernate…sending you a hug { }

There is a NEW option. I saw my rheumy Wed. and informed me of a just authorized new medication as of this week. Find out more about it so you can advocate for yourself.

I have been on Humira and it is not doing enough and will be starting Enbrel soon. Each person's body is different and so each reaction and history of medication effects is different.

I am a psychologist myself and have considered going for some therapy for me as I have been dealing with orthopedic issues since age 12, food "allergies" (hypersensitivities) since 2003 and PsA diagnosed just a year ago. I'm 68 and facing declining functional use of my hands over time.

Find a better Rheumy and advise him/her of what you found objectionable with your old one and what you are seeking now. Good luck,

Dandlyons - you are going through some really tough stuff here. By making that step to get counseling, you are confronting one of the fundamental issues all of us with PsA and other chronic illness deal with - our mental health. Keep it up! I can say from my own experience that talk therapy and antidepressants were the essential things beyond Humira and MTX that changed the course of my disease and outlook on life. Beyond the physical symptoms and the negative associations with your doctor and friend ausing confusion and conflict in your life, there's a lot of evidence out there that indicates the disease biologically causes psychological disturbances from "brain fog" to anxiety to depression etc. But at the very least, it's great to have someone to talk to who is impartial, and living with chronic pain is enough of a reason for anyone to seek out talk therapy. Don't forget your pain is real. As much as you want to forget about it, don't second guess yourself about your symptoms.

Before I was diagnosed I saw several doctors who poo-pooed my symptoms. It took a while, but I found a great rheumy who took me seriously, ordered the appropriate tests, and speaks to me like a peer. Don't stop trusting yourself! PsA is very unpredictable and very different from patient to patient...for your doctor to make these sweeping generalizations is a huge red flag - symptoms and treatment can and will change even within the same individual, so for him to say you've expired all your options doesn't even make sense. Don't wait to move to find a better doctor, it's your body! It might be as simple as doing an internet search for rheumatologists - get the best you can in your area. I went straight for the best rheumatology clinic in my city, no more screwing around, and never looked back. (And then when you relocate they might be able to help you find another good dr.) Also - be careful with the NSAIDS - even low doses used for long term can cause significant damage, including heart failure and GI problems. My mother had a heart attack which was likely caused by long term ibuprofen usage. I will say I disagree with Stoney with the statement that you are not being treated correctly if you need tramadol (I think you are being treated incorrectly if your doctor is not listening to you, not ordering the appropriate tests, and not administering the correct therapies, which includes pain management along with DMARDs, biologics, and physical therapy/exercise among other things). We all have differing levels of disease activity and pain, and painkillers play a huge part in maintaining a good quality of life for many people, myself included.

Your "friend" doesn't really sound like one. I might suggest getting a little space from him for the time being, at least while you get this sorted out. Some people just cannot handle chronic illnesses, particularly invisible ones that are hard to treat. Remember that while you need time to sort out your feelings, he does too. I'm not saying his behavior is right, but in any case it's not helping to have him around at this time, you don't need that added stress (a huge cause of symptom flares btw). He may change or he may not. I've found some of my relationships have changed dramatically, most for the better, but some have been damaged - it's really helped define who's truly a friend and who's not: those who are simply have your best interests at heart. Period. Some of the best advice I ever got is "Go to the love. Eschew the negative, life is too short."


Sorry you are having such a hard time. I too am having quite a bad few weeks. My hands swell, and hurt like hell. Along with things like sholders, spine, feet etc.. One good thing about being about as low as it can get is that better days are soon to come. I promise:) That is what keeps me going. I feel that I have a wonderful doctor. I also kept asking questions and she finally looked at me and said "PSA is one of the most painful forms of RA. Instead of just the joints/bones, it can inflame everything from the tendons and soft tissue to the long bones themselves" Other than the immune suppressors, pain meds, nsaids etc... There isn't much a doc can do for you. Sometimes, we just have to hunker down and wait it out. You need to find a little place in your mind where you refuse to allow the pain to find you. When it gets too bad, go to your special place and wait it out. On the other hand, it is hard for our care takers to understand this. Sounds like you have a rough case and no doctor is going to be able to wave a magic wand and make it go away. All they can do is communicate with you and find a drug program that works. I have had my best luck with a university hospital program and I drive 3 hours each way because I love my doctor. Find one you like and trust and that will at least offer some hope. I wish you the best and just want you to know that no matter how bad it gets, there are others out here who understand and will be here for you when you need us.

Hang in there, it WILL get better,

Frank B.

Dandylons, I am so sorry that you have to cope with all of this all at once. Just doesn't seem fair, does it?

Many people, for whatever reason, think that seeing a counselor is akin to admitting to weakness. I must, emphatically, disagree. Talking to someone who is trained to truly listen and "hear" what you are saying, and then gently guide the discussion to help you find answers is something that anyone going through the major life changes you are should do. Did you know that losing a job, relocating to a new city where you don't know anyone, losing (or feeling like you are losing) a dear friend, and being diagnosed with a chronic illness are each stressors that equal the stress levels of a death of a loved one? That kind of stress could knock anyone to their knees, yet you keep picking yourself up and going on. Kudos to you! We all have moments in our lives where we sink into a black depression, and it sounds like you have every reason to do so. What I find truly telling here, though, is that you recognized that you are in a dark place and are doing something about it. This is the sign of a thinking, logical, intelligent person.

I completely agree that you need to find a new Rheumy ASAP. Any doctor who becomes dismissive with me is NOT my advocate...and what are doctors except advocates? We are all living our own lives, and some days living in our own personal hell. Beyond the original diagnosis, we don't need a doctor to tell us what is wrong with us - we KNOW. What we need doctors for is to tap into their vast medical knowledge pool and pull out some answers on how to manage our illness. If he isn't doing that, he isn't helping and needs to go.

I'm sure I don't have to tell you this, but depression is self-propagating. You are depressed and do not feel like going out and doing anything so you sit at home which feeds the depression. The depression gets worse so you hunker down and isolate yourself further to "protect" yourself and because it just doesn't seem worthwhile to muster up the energy to get out and do anything. Which increases your sense of isolation, imagine that :). Time to break those chains. I haven't read your profile, so I'm not sure where you are living, but in every city, village, small town, etc there are things you can do, places you can go to reenter life. Some are even free (which is a major consideration for those of us who are no longer able to work so have financial worries to add to everything else). Find something that interests you and go do it. I know how awkward it can be to do these things by yourself, but its a first step to developing a new set of friends and a new support network. Anytime you want to talk, you are welcome to chat with me, email me, etc. I'm living in my own isolated little world also, and would love to talk more with you.

Well, I have to say I have recently been treated this way with my Rheumatologist. She saw swelling in my hands and I reported all my pain and symptoms to her but, she refused to do anything to treat the PsA and wouldn't even let me come in when I was flaring up bad! So I went to my regular doctor and told her what was going on . She was very upset because she knows how much pain I am in, she knows I have severe psoriasis everywhere on my body and she made one phone call to a dermatologist, got me in the next day and this new dermatologist said she was going to get me on biologics! So maybe you can see if that is possible for you? I don't know what else to recommend to you to do for this. :(

You say you have "doubts in yourself, " and in a recent discussion another forum member said she was annoyed with herself because of her dandruff. The problems we have are bad enough without blaming ourselves for them. I didn't ask for this. I am a full-time caregiver of my desperately sick husband. I had enough drama to satisfy my tendency to blame myself for everything. I didn't need firey skin and painful joints, too.

Blame your doctors, fate, shake your fist at the sky, but darling, stay on your own side! Be good to yourself.

That said, I don't know what to tell you besides take copies of the tests you're getting and doctor shop. Also, here is a nutty thing that I do whenever I'm researching any product, service or doctor. I Google, "I hate [Dr. So-and-So] in [my city or state]." You might find a lot of people in other forums just blowing off steam, but if you take the good and the bad together ("I love [Dr. So-and-So]", you might be able to find someone new without wasting any money.

Just hopping on to let you know that someone else in the world is sending good thoughts your way. I second a lot of the good advice that is already listed on this thread.

FrankB is right. It WILL get better. Samantha's suggestion to "stay on your own side" and to "be good to yourself," are important. Too many good thoughts to list them all.

You are taking good steps to get the help you need through therapy. Good for you! Keep it up and hang in there! :-)

I am sooo very sorry to hear that you have lost someone you consider a dear friend because he cannot overcome the realization that his friend is ill. Remember you are ill and no matter what anyone says or how poorly you feel you have been treated, you are still the same glorious child your mother gave birth to. You have not changed. Your lifestyle has changed and you did not ask it to.

I saw a psychiatrist and and physiologist and attended regular sessions after time on the psyc ward. It left me more confused. The psychologist told me to see neurologist saying I definitely was suffering multiple physical issues.The neurologist told me I was" a menopausal anxiety prone female with vitamin D deficiencies." The Internest told me there was nothing wrong and to pull up my bootstraps and go home and stop whining , my psychologist told me after watching me struggle for six months with pustular outbreaks that I was a hypochondriac and my primary did not even have any idea what my rash was despite downloads I gave her on my Guttate psoriasis She threw them on the table and ignored them.

I'm just not sure the mental health world is the way to go. I know you are depressed and in need of a listening ear and a shoulder to cry on. Come here and come often if you need to. There is always someone hearing your story and sending a good thought back at you.

I have lost more than half of my close relatives because they think I am playing a game. This is no game and it isn't any fun. You will lose people as you go forward but consider... the new you is not someone that might chose their friendship if you had to chose again anyway. You will find peace in your heart and feel better soon. My thoughts are with you and if you are feeling really bad off, call the suicide prevention hotline number or emergency room, do not let your pride stand in the way of your life. You would save a friend, save yourself. You are worth it. Keep us all posted:)

Hi dandlyons,

I'm sorry this is happening. I had a bit of trouble with my rheumy at first but hounded him with calls and making additional appointments. Now I seem to feel things are getting on track. Can you arrange to see a new rheumy ? Maybe see your GP and get a referral ? I know how you feel...I had so much trouble with depression because of the PsA daily issues. Pain and swelling were making me crazy. Then there is the anxiety over it all.

You need to see someone that will listen, not only and rheumy but someone who can understand and help you with the psycological issues that can go with PsA. I hope your appointments went well.

I was recently diagnosed about 10 weeks ago after almost 2 years of joint pain and extreme fatigue. I had seen numerous hand and foot specialists, and a rheumatologist for the last year without any diagnosis other than multiple arthralgias. I finally went to see my primary care doctor in July and complained a lot more than I typically do. I specifically asked to be referred to a different rheumatologist outside of the local medical clinic for another opinion. I traveled 3 hours to a university medical center. Within minutes the rheumatologist had a diagnosis for me, a referral to dermatology the same day to confirm a diagnosis and a treatment plan before I left. The previous rheumatologist dismissed my complaints as "wear and tear" aches and pains, treating with nsaids, occasional joint injections and occasional low doses of prednisone. I felt suspicious all along that something systemic was going on, especially when the fatigue started. He dismissed the fatigue as allergies. Over the past few years I have even specifically asked dermatologists ( yes, more than one) and my rheumatologist earlier this year if my scalp lesions could be psoriasis. Each time it was dismissed as sebhorreic dermatitis.

Lesson learned: be persisitent, don't give up when you feel things are not right. If you rheumatologist isn't listening find a new one. My opinion: you shouldn't need tramadol to control pain unless all other DMARD/biologic treatments are not effective. Treating pain is not treating the disease. If you primary care isn't listening, find one who does. If therapy helps, I'm all for it. I think the bottom line is we all need our doctors to be on our team. I hope things go better for you soon!

Tramadol needs off the market pure and simple. I have no clue as to how well it works in regards to pain control nor do I care. There has not been an Opiod (synthetic) not one that hasn't caused more psychological pain and grief than the good they have done starting with demerol to stadol and now tramadol. There are a number of reasons its available still, but it won't bwe long. PLEASE do not be fooled. You are better off with real opiates if need be.

The only way that Tramadol helped my pain was to make me go along with it, cos I was in a happy little cloud of delusion…so no help at all…sorry lamb I know you said you didn’t care, but just thought I’d fill you in on my experience of it.

tntlamb said:

Tramadol needs off the market pure and simple. I have no clue as to how well it works in regards to pain control nor do I care. There has not been an Opiod (synthetic) not one that hasn’t caused more psychological pain and grief than the good they have done starting with demerol to stadol and now tramadol. There are a number of reasons its available still, but it won’t bwe long. PLEASE do not be fooled. You are better off with real opiates if need be.

Wow lamb where were you 2 days ago??? :( My doctor prescribed me Tramadol for my pain on Wednesday! I researched it online and found nothing bad about it. Please send me links to anything I can read about it. She prescribed me the regular tablets 50mg and I have been cutting them in half. Today is the 3rd time I have taken one. This is to hold me over until I get on the Enbrel and she said that will take about 8 weeks or longer. I am also on Flexeril at bed time because I have to do PT again. She said often they prescribed Tramdol for the pain during the day and Flexeril at night to loosen up my muscles and tendons. The only other thing I have for pain is my Nsaid gel. I can't take any oral Nsaids and narcotics are too hard on my stomach too.... Now I am nervous that I started taking it already.

tntlamb said:

Tramadol needs off the market pure and simple. I have no clue as to how well it works in regards to pain control nor do I care. There has not been an Opiod (synthetic) not one that hasn't caused more psychological pain and grief than the good they have done starting with demerol to stadol and now tramadol. There are a number of reasons its available still, but it won't bwe long. PLEASE do not be fooled. You are better off with real opiates if need be.

Don't worry about Tramadol unless it is being used instead of treatment for your PsA. For those of us who are allergic to NSAIDs Tramadol is the first pain reliever stronger than Tylenol. For some with PsA there is much relief in treatment with MTX and biologics but still need pain relief. I was prescribed Tramadol a year before I was diagnosed with PsA for a separate condition. I drive with it on some rare occasions when I need it during the day time. No tiring or slowing of reactions.

here you go:


among the "more common effects: (I just picked these as they fit the thread the actual list is much longer)

  • agitation
  • anxiety
  • discouragement
  • feeling of warmth
  • feeling sad or empty
  • general feeling of discomfort or illness

The dependence devleoped on this class of drugs is incredible the Psycholgical dependence is unbelievable. I know folks who have struggled for a year or more to get Off. Like louise said it really doesn't do much for pain BUT you don't give a poop (about anything. its becoming a common drug because anyone can prescribe it. Although a number of states have reclassified it as a much higher class.

The fact is we were lied to about Tramadol (just like stadol) http://psychcentral.com/news/2012/09/26/new-study-on-tramadol-painkiller-abuse/45208.html

Try this one if you want the beejeebers sscared out of you:


Or this one (personal experiences take with a grain of salt but in my esperience very true)


I just snagged this one in regard to the FDA warning changes for Tramadol. They are being changed again There is a very High risk of suicide with this "drug"


I understand pain and what it does. I'm just not convinced THIS drug is helpful in the long run.