I was diagnosed with pmr one month ago, yet knew I had something wrong for months. I still haven't been able to see my new rheumatologist (my appt isn't for 2 months). I don't know if this because I live in the US and it's first come first served.
I would appreciate your stories of flare ups, because I think I'm experiencing the worst one I've had so far!
Today, when my doctors office open, I'm going to call my doctor rheumy and/or gp and tell them that I am barely able to move and see if this speeds up an appointment.
Thank you. I feel frightened and alone with this new body of mine.
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pollymarierose
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I don't know if he does. I spent a whole week after my diagnosis, calling everyday to see if there was anything more they could do. For everytime I called, a different assistant would call back and give me an answer that was totally unrelated to what I had been calling about. I finally became frustrated and stopped calling. Have you ever had a flare up where you could barely walk without fear of falling down? And it's not just pain, it's that you're muscles aren't functioning?
I have yes - I had PMR for 5 years without pred and if it was being bad, I couldn't move. I also had occasions where I felt as if my arms and legs simply wouldn't do what I wanted them to! I fell quite a bit!!!
You might find some relief with warmth - we used to suggest using an electric blanket BEFORE getting OUT of bed, then stretching in a warm shower. Once you can get moving it is an incremental effect. I used to do an aquafit class (at my level) followed by Pilates and then I could move - it kept me upright and mobile for those 5 years.
I very much appreciate what you just said. It's like I can't get my brain to tell my arms and legs what to do. If I can get a leg to move, I might just fall because of the pain that causes my leg to lock up. How could I have gone 1 1/2 pretty decent days to all of a sudden not having any control? Before I knew what I had, I would thought this impossible. Now, it seems, I am not through being shocked by what this disease does. I'm sitting in a recycling chair right now, moving my heating pad around. I'm hoping in a couple of hours I'll feel strong enough for a shower. Then, my concern will be if I'm able to raise my arms up high enough.
Thank you very much, PMRpro. Without friends like you, I would feel very alone. 🙂
Hi....I am in the USA too. Are you on Medicare? Because if you are , you can call on any rheumatologist and get an appointment sooner. I got an appointment within one week. I didn't keep that particular doctor and in fact "interviewed" 7 rheumies before I found that "right" one for me. I don't have a Medicare supplement or advantage plan just straight Medicare.
No Medicare yet. It's appalling to me that my pcp doctor and new rheumy are comfortable enough to just send me home to wait for months before proper treatment. Today I have to call people I know to see if anyone can come over and help me.
That's awful....I remember very clearly the pain and frustration at the beginning of this PMR when I didn't think I could stand the pain one more minute and no could figure out what was wrong. In fact, I went to emergency the after Christmas 2017. Did you ever think of going to the emergency room?
I have thought about the emergency room but in the US it's first come, first served. The idea of sitting for hours in the ER sounds even worse than how I feel now. From experience, I wonder if they would even fo a better job than my pcp doctor. I'm going to try calling both my pcp and start searching for rheumys who can see me sooner.
Not much....they couldn't figure out what was wrong with me but I had never heard of PMR at that time or I would have mentioned it to them..they sent me home after an overnight with pain killers which of course did not work. I diagnosed myself after much research on the internet (I had all the classic symptoms). I was in pain from early Nov 2017 through mid Jan 2018 before I got the Prednisone that finally gave me relief from most of my pain.
With the medical community the way it is today you need to be proactive and assertive otherwise they push you aside
Good luck.....I hope you get some resolution quicker than 2 months.....
Could you please tell me what gca symptoms are (at least for you)? I have had some for quite awhile. Headaches, pain in temple, painful artery in my neck. But now I can't seem to get my brain to tell my body what to do. I can't believe that my doctor is being so cavalier about it. Even the rheumy who has me on a 2 month waiting list.
Well, if you have reported GCA symptoms it is cavalier. My main symptoms were a strange neck pain at the back and base of skull that didn’t go away and was resistant to massage. Scalp tenderness and burning in temple. When I chewed my jaw muscles ran out of steam and felt crampy.
I live in California and have Kaiser HMO. When I sent a message to my GP describing my symptoms, he consulted with rheumatology who recommended ordering ESR and CRP blood tests. They came back very high and I had a rheumatologist appt within a week. By the time I got to the office, I already had a presumptive diagnosis in my file.
Do your doctors know that your symptoms are debilitating, and potentially suggest GCA? I would make sure that they know that and that you know the seriousness of delaying treatment.
Sometimes we have to be forceful and demanding. Polite of course, but assertive. I'm glad I didn't have to jump through hurdles to get treatment.
Thank you for your reply. I've had the bloodwork which comes back positive and their recommendation was to schedule me with a rheumy. Which they did. I don't know if because our clinics have become more like factories, where talking to multiple assistants that are dealing with the pcp and the physicians assistant, that things don't break down in translation? I've been seeing my internist for 10 years now and I've mentioned my RA that I've had since 1986 more than a dozen times, only to find at my last appointment the physicians assistant noted on my charts that it never listed RA.! What!!??
So sorry you are in so much pain,l hope that you will be given prednisolone as quickly as possible as it could only get worse .I was fortunate that my doctors surgery receptionist made sure l wasted no time going for a blood test and then giving me an urgent appointment,l was given the steroids within one week,just as well because like you l could barely move.l hope that your doctor will help you as soon as possible,and give You the medication you need .The prednisolone should work really quickly to relieve your pain .l must admit we are fortunate to have our NHS here,l realise it may not be as easy for you to get help as quickly,please let us know how you get on.
Thank you, Grants. I've been wondering that myself about how slow US doctors are to respond. Could it be a newer (or just recognized) disease in the US? My job from my recliner today (still a couple hours to go til offices open) is to find someone who will see me this week!
Hi Pollymarierose
I’m so sorry you are not having any treatment despite having a diagnosis, could your Primary Care Doctor not start you on Prednisone, it’s such a shame when you’re in so much pain & the treatment is basically very simple.
Thank you for responding MrsNails. I'm going to try today to get into my primary care doctor or find a rheumy that won't make me wait 2 months to see him. Are you in the US or UK? I'm asking because your the first to say prednisone instead of prednisolone.
I do think you are right when you say that this illness is often not recognised by doctors,the same thing can happen here,the trouble is they confuse it with other rheumatic illnesses .l know that it has been said on this site by some that they wish their doctor could read the posts ,it would give them more information about the illness.l hope you will be seen very soon,and particularly if you have GCA symptoms,l wish you all best for a good outcome.
My doctor fortunately asked the right questions, being aware that I was filling all the criteria (symptoms then blood work). But, then it got turned over to a rheumy (who either hasn't seen my diagnosis, doesn't care, or is thinking about ....I don't know what). I'm pretty sure I have the gca symptoms. In fact, I think I noticed those symptoms before pmr symptoms. That scares me that I'm walking (hahaha....walking) around with gca symptoms and nothing is being done.
I'm not sure how things work in the US but, as you might also be suffering from GCA, I think you should go to the ER (or A&E as we call it in the UK) of the hospital where your rheumatologist is based. Explain that you have been diagnosed with PMR and have been given an appointment, but that you think you need to see somebody sooner as you may have symptoms of a related condition GCA, which can have serious outcomes - i.e. blindness or a stroke - without steroid treatment. Arm yourself with a description of the disease and its treatment from a reputable body such as this one from Johns Hopkins:
They should at least offer you some blood tests and will maybe realise that, whether or not you also have GCA, you should certainly not be left for two months without any steroid medication at all. When I think about the terrible state I was in before starting treatment, it seems thoroughly cruel that you haven't been offered prednisone, which would make such a difference to you.
Marijo, thank you for the links to refer to. I think from what you and several others have said, that if I can't get a response from my doctor today, that the ER is the only other option I have.
Can't believe your doctor has left you untreated. Many of us know the agony we were in before pred. Agree with everyone that you should definitely get to ER armed with those links people have shared for you. Good luck. Let us know how you get on.
Just one tip - when you mention having a headache, the receptionist might tell you to go home and take paracetemol (it happened to me once!) Stand your ground and explain it's a very special kind of headache!
If you do go to the ER, I'd recommend going with print outs or the linked articles. You may have to educate them. There is a lot of confusion out there: age of onset, meaning of symptoms vs blood markers, etc...Some physicians seem to have old information. Many rarely see either PMR or GCA. But a trial of Prednisone can provide answers.
When I presented my rheumatologist offered to do a temporal artery biopsy. Since in my readings, the biopsy wasn't definitive, with plenty of false negatives, I declined. But since I did have head pains the call was iffy. My rheumy made it clear that I needed to carry an emergency dose of 60-80 mgs of prednisone with me at all times together with a baby aspirin to take, and to go immediately to the ER if any visual symptoms developed. I know that is not the choice that everyone would have made. 26 months later I'm at 2mgs. Thankful for a relatively easy journey to date. Still only PMR.
But I still carry that cache of Pred and baby aspirin.
That's a wise suggestion. Since I have been unsure as to what's going on above my shoulders, I always have baby aspirin and take at least one a say and more if needed. Since I joined this wonderful group several days ago and was adamant about not going on prednisone, I have changed my mind. I can't wait to start a potentially healing therapy!
So many of us felt the same about not wanting to go on pred with its side effects etc but it is the only thing that helps the inflammation that comes with pred and it's the lesser of 2 evils. Lots of people get almost instant relief too. I took a bit longer but still so much better compared to how I was pre pred. We are routing for you and hope you soon get some proper medical care 🤞
I am in the US too in NJ. I've never had to wait so long for an appointment; where do you live. ? Have you been prescribed prednisone yet.? Is the rheumatologist you have an appt. with experienced in vasculitis.
If you are thinking of going to the doctor's office, you can move. Maybe not like before, but you can. I think there are far worse diseases than PMR and we have to keep this in perspective. I do get it; the feelings of isolation and fear. I've been there too. But obsessing doesn't help and only adds to the control of the disease. Mind and body can't be separated.
You need to calm yourself down; a new diagnosis (even belated) is always scary and an adjustment. Doctors are not magicians, and placing all your hopes for relief in a doctor's visit, will only end in disappointment.
You may be in for a rough ride, but if you are otherwise healthy, PMR can be controlled, and tamed . But you are the one that has to be in charge.
Even if it requires a valium or a drink before you see the dr, panic will only make things worse, and I sense panic in your writing.
Try to distract yourself from negative feelings with something you enjoy, whatever it is. I don't mean to sound harsh, but get a grip on yourself, girl. We can't separate the mind from the body. You will be OK when you are stabilized.. You will, and this site is the place to go for reassurance.
It is a disease that hurts, and that can be controlled too.
Let us know how you are coping after you are properly medicated. We are here for you.
And you do need the prednisone. In 2 days of 16 mg., I had no pain; none. That will stabilize you so you can think about how to deal with the longer term.
Taking prednisone is making a deal with the devil; don't let any doctor rush you off it too fast either.
And one more comment, I had a sudden loss of vision in my left eye while calmly watching the news about 9 mo into this saga. I remained calm, and the vision magically came back in less than 15 m. I went upstairs, increased my dose of prednisone; I did not go to the ER. I then had my eyes thoroughly checked by 2 excellent ophthalmologists and was found to have a haze over the central retinal vein which can easily be removed be laser. My carotid arteries were clear; doppler of the orbits we're normal. Neither specialist thought it was related to GCA. The cause is not known, but it can be fixed easily. We can't jump to conclusions.
But always have extra prednisone on hand; that is correct.
I am in the US also. My GP diagnosed me with blood tests and gave me a prescription the next day. They is no reason they can't get you started on meds while you wait for your referral. I ended up at at a rhuemy because I referred myself. Got an appointment within a week. I don't understand why you are being made to wait like you are when you could be feeling so much better quickly. ❤️
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