Running on fumes at this point

Hi, it's me again - the "this is so damn miserable and feel like I can't take it anymore" woman.

After 1.5 years of utterly disabling GCA symptoms (after never being sick in my life - very active), I am literally running on emotional and mental fumes.

It took months of demeaning (too young; just stress or hormones; work on my anxiousness and any emotional problems; or, I see migraine people all day long and no one complains about their symptoms like you) appointments and treatments before I found a neurologist who would clinically diagnose me with GCA. I have the classic symptoms in spades and smart people here have agreed with me.

I have been on 6 months of prednisone - only thing that touches the pain - I have been still just barely functional from pred side effects and deep fatigue. MORE Importantly, my inability to taper at all (even with pain med help) made my neurologist wary of the diagnosis. I was feeling pretty "stuck" too.

So, went to GCA specialist who said "I have bad news for you - I don't know what you have but it's not GCA. You must come off pred and we'll biopsy in 4 weeks after and put that diagnosis to bed once and for all.

So, as I am really struggling with pred side effects, and was making no progress at all, I am ok coming off the pred. Relieved even,

But, this will take months and this hS been going on so long. My life is so very small.

I feel I live in a ghost town of my old life.

It's so difficult to be in this awful place ever day, 24 hours a day. No breaks,

Other people seem much better than I on this board . I just cry a lot and wonder how to get through the next shitty 24 hours.

Any feel despairing? I often do.

26 Replies

  • Expert eh? Well after 6 months of pred there is no way a biopsy would be positive even if it is GCA. So I don't see how a negative biopsy will put the dx to bed - particularly since a negative biopsy in ANYONE doesn't mean they don't have GCA. It just means they didn't find what they were looking for - and there are several reasons for that.

    However - I don't dispute his assessment that you have something other than GCA.

    What dose are you on currently? If you are reducing the dose to get OFF pred altogether you can reduce quite quickly down to just under 10mg/day. You aren't looking for the lowest dose that manages the symptoms, you are aiming to get off come what may. After 10mg you probably will have to go a bit slower because of adrenal function needing to return but that is a different thing.

    What symptoms DO you have?

  • I am coming down 5 mg a week. Taking Percocet to do it, but managing pain ok/tolerable mostly. Am now at 20 mags. Was at 40 for 6 months.

    Disease symptoms are 24 hour non stop vice like grip all over head; severe pain inside head and down neck; jaw claudication; soft spots on head; pain down arms to thumbs; fatigue. Pain intense patches over ears - temporal?

    Had two odd aneurysms removed from temporal lobe last August; onset was severe flue like symptoms for 4 weeks.

    Pred symptoms are the common ones.

    Why do u think it's not GCA?

  • I didn't say I didn't think it was GCA - I said I'm not disputing his assessment, he could well be right and he has seen you. But equally he could be wrong.

    What do you mean by soft spots on head? It does sound awful to have to live with - I do hope he can find an answer for you.

  • Sorry, no soft, but rather extra sore spots.

    Ok, thanks for your reply. I appreciated your swiftness and the info on coming off prednisone in this particular case.

  • Do let us know what he decides it might be.

  • Will do, but he was completely preplexed. He said I show no signs on inflammation anywhere - pre or post pred. Can pain come from something other than inflammation?

    Last question for u - did you agree with his assessment because I can't taper? Or why?

  • What does he mean "show no signs of inflammation" - it doesn't sit there with a label on! And 1 in 5 patients with PMR or GCA do not ever have raised blood markers, the ESR and CRP tests.

    As I said - he has seen you and he MAY be right, or not. Any chance of a second opinion?

  • Yes, this was my second rheumatologist who said it's not GCA, but no idea what it is. Neurologist and Lyme disease/multi-system specialistand functional medicin expert all day yes, at least classic symptoms warrant clinical diagnosis. I didn't know that about the 1 in 5. Thank you!!!! You are an amazing wealth trove of information. I really appreciate your taking the time to respond!

  • Oh, my dear, yes. We've all been there one way or another. I agree. It's downright awful.

    I wish I had more knowledge to give. I don't.

    What I do know is that depression is part of the disease, and that's what you are experiencing right now. Not only are you dealing with your physical problems, with the uncertainty of where your journey will take you next, but with your limitations.

    I wish I had something wise and wonderful to say that would bring you comfort and bring you cheer.

    If it helps, at least someone heard you.

    Hang in there.

  • I am definitely not a doctor but wow does that ever sound like GCA including the depression and if I had a penny for every time I have been told I was too young to have PMR, GCA, you name it....

    In any case I don't have any sage advice for you but I hope and pray you can get to the bottom of what's going on and be made comfortable while doing so. 💕



  • Thank you so much for your note!

  • "I feel I live in a ghost town of my old life."

    Yes I know that feeling and place. I try and pick smallest good thing to focus on. Can be as small as thumb not hurting for a few hours. I hope you get some small changes for the positive. Will be keeping fingers crossed for all of us in ghost towns. 👻

  • Thank you for responding. It is good to not feel alone. I am so sorry you have this, too. The grace of human connection like this is pretty profound. I appreciate your taking the time to send your note.

    And yes, I believe it's time to move out of the ghost town. What I used to do has not been possible for 1.5 years. It is time, per your note, to start a new baseline for a live worth living.

    To your point - what small thing can I be grateful for now?

    So appreciate your post.

  • My good thing today is that temp outside is below 18c ...anything above that knocks me out. Can't control it so just happy it's cooler.

  • Mine is your note and everyone's replies. I have felt so lonely even though I have such lovely friends and family.

    Talking and hearing from people like you is very very different.

    I suddenly feel a part of some community.

    Thank you so much for bringing me such compassion.

  • 11 years ago my lower back pain got so bad that I had to start opioids and I had to stop doing my line of work. And in fact my whole life seem turned upside down. I turned suicidal. It is without a doubt the most difficult part of chronic pain is to lose the life that you once had. Pardon me if this sounds infantile but dammit it's just not fair.

    Fortunately for me I did not actually try suicide and I spent a week in the hospital dealing with my ideologies. But from there I was put on some antidepressants and counseling and through the years I have finally come to terms with the life that I lost.

    Then 10 months ago I was diagnosed with PMR and although I didn't consider suicide I'm going through a similar depression from losing even more of my life that I had come to except. So I am in therapy again.

    I'm telling you all of this so that you will know that you are not alone. in all of the pain sites that exist on the world wide web and on Facebook people in pain mourn the life that they lost. My suggestion to you is that you seek therapy. I don't think any normal person can deal with 24 hour pain and not have some depression.

    I wish you well and I hope that you can get some help and find some peace.

  • Thank you so much for sharing all of this. It was very helpful to know I am not alone in this utter despair. And that there is hope in re-calibrating functionality as you did. Ugh - I am so sorry you now have to contend with a whole new "drop down" with your recent PMR Dx.

    It IS unfair - damned the infantilism.

    Interesting you mention therapy. I started last week (feeling I have started to brush the edge of despair too frequently lately. Weekly sessions. Not sure she is the right one, but not feeling particularly picky right now. Just need some help right now to keep my head in the game.

    This is really tough, isn't it?

  • Finding the right therapist is really important. If you still feel this way about this therapist after another couple weeks I urge you to look for another one.

    I was lucky enough to find a therapist that deals with a lot of chronic pain patients. She is by far better than my previous therapist that I had to stop seeing because she was doing nothing for me.

  • Yes - to echo Amkoffee - it is essential the therapist is right for you. I saw someone some years ago who actually made me worse, dragged me into the pits and then said "Time's up. I'm finished for today" and left. A few months later I finally got a referral to the psychologist who came to our GP practice - totally different experience and after a few sessions I was already "out of the woods" though I kept on a bit longer.

  • Hi, I do not have GCA ("only PMR") but just a few thoughts. My story is similar in that it took 6 months to get diagnosed even with classic symptoms. In those months the inflammation ran unchecked causing pain, lose of mobility, and horrible thoughts that now when I look back scare me. You mention that you were on 40 mg for 6 months. Was that your starting does? Did it stop the symptoms? I read that others with GCA start with 60-80 mg so I'm curious if the problem is that you nedeed to start higher to get it under control. If the doctor doesn't think it is GCA, what is he suggesting it is? I am assuming that if he is a GCA specialist that he is a rheumatologist? I hope you get some relief soon. Please keep us up to date

  • Thank you. Started at 40mg. Both neurologist and rheumatologist vehemently agree I do not need to go higher. On the contrary-they say I am not responding to prednisone, have been on high enough dose for far too long and I probably have something other than GCA. Yes, he is a rheumatologist and he actually said he has absolutely no idea what I have, but thinks it's not only non-vascular, but out of the rheumatology category completely. What he is basing this on is absolutely confounding to me. Plus, he said he has absolutely no idea whatsoever what I have.

    It's really depressing.

  • i had originally gone to an orthopedist who only wanted to give me cortisone shots. Ignored half of my symptoms. A friend who is a PT had a fit and suggested I see a physiatrist (functional medicine). She said their job is to do the detective work, figure out what was wrong and get you to the right doctor. It worked for me, although I think your case is a bit more complicated. I did need a referral, not because of insurance but that was the only way to get an appointment. Where in the USA are you? I'm in New England.

  • Thanks. I have seen every specialist I can think of, including 2 functional medicine experts. They had no idea - supplements for inflammation, sacral cranial work; other stuff. Nothing helped.

    Saw a chronic Lyme specialist for months. Took antibiotics; was negative on all tests. No relief.

    Appreciate the thinking though. Am trying all alternative and medical specialists.

  • Feeling you are at and beyond you limit . I doubt if anyone who reads your post cannot totally empathyse. Currently I am with you and hanging on. I guess what helps me is knowing others have been there and got to the other side, the roads taken vary, doctors seems to put up road blocks, the illness doesn't follow the Highway Code and you don't have the wherewithal to navigate the way ahead.

    Stick with it though, the best advice I've had on this illness has come from the extremely knowledgable people, some who I see have already posted.

    Good luck

  • I have certainly had some terrible moments in the 5 plus years I have been dealing with PMR. I am a counsellor myself and do believe it can be really useful to vent and be supported in every way, but my experience now tells me, as per some comments above, that you do need to get the right person, especially one that has experience of chronic pain. More recently, I have virtually given up work, believing that counselling has been stressful as a job and may not be helping my recovery. I am also opening up to more spiritual ways of seeing my plight and trying to understand what is going on at this level. I was pretty sceptical before but opening up seems to have made the pain more bearable and less overwhelming. After all, the doctors know very little about auto- immune conditions, so why not try a different tack? If you are interested, " The Medical Medium" is a very interesting read.

    Be gentle and compassionate with yourself, this stuff is a huge challenge. Xx

  • Hi Kellykel just wondering if you were on enough pred, I started off with flu like symptoms, neck pain, and thigh pain,

    I was diagnosed. In January 2015 with PMR first and only when coming down the dose, I developed the jaw pain, headache, I was admitted to hospital, and had a positive biopsy, and my dose was increased to 60mg pred, I was fine leaving hospital,

    But next day I developed severe headaches, and they prescribed painkillers,

    They didn't seem to want to increase my pred, but a week later my sight went, for 15 mins, which was very frightening, but consider myself very lucky, I had 3 episodes of this, but my dose was increased to 80mg pred,

    And I had no pain, just the horrible side effects of pred And certainly depression is part of this,

    So can't help thinking if maybe you were not on enough pred to control the inflammation. How is your ESR and CRP blood markers, as mine always react to the level of pain I'm having, I do hope they get to the bottom of this,

    Best of luck, take care X

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