Anxiety

[Libertylane]

Anxiety off the chain. Can’t calm down. I still don’t have a clear pic of my situation. What do some of you do or take for this. Back on a tad of my klonopin and trying guided meditation but so bad at it.

[HeronNS]

If you've been on medication it's hard for us to recommend other things as we don't know what the interactions may be. I found to calm my nerves for air travel a Bachflowers formula called Rescue Remedy has proven helpful, but I was not on any other medication, not even pred, when I first used it.

[piglette]

What does your doctor say?

[GOOD_GRIEF]

There's a certain amount of anxiety that goes along with finding ourselves in a new situation. That's a normal and rational response. This anxiety will begin to abate as you learn more about your condition and your treatment.

But to effectively understand your new situation, you need to be able to think clearly. When you find yourself getting anxious, tell yourself "This is normal. This is rational. This is to be expected. This situation will improve with time and treatment and understanding. Right now, the best thing I can do for myself is control my reactions, try to relax and remain calm. This situation will improve."

Many of us felt "buzzed" on our initial doses of pred. Your body will begin to adjust, and the effect will diminish as you taper. But you need to take enough pred to control the inflammation to avoid flares in symptoms. If you consume coffee, tea or cola, try cutting way back to see if that helps. Caffeine often intensifys anxiety.

If you are coming to PMR with existing anxiety issues, you need to consult your doctor(s) before fiddling with your dosages of any medications, supplements and self-treatment. Trying to balance this out on your own probably isn't gong to work. It may take a while to find the right balance and the right combinations of treatments to get this right for you. Have confidence that you and your medical team will get you there. It won't be easy for any of you, but working together, you can find the right path forward.

Now, I am not telling you this is "all in your head". Anxiety is real. It exists in our human response portfolio as a survival mechanism. It has physical effects. Pred may intensify or compound these effects, as it in and of itself is a naturally occurring hormone that stimulates our bodies to respond to inflammation. For reasons not yet understood, we who have PMR, are over-producing inflammation, and the hormones that would normally reduce and eliminate that inflammation from our systems are not being produced at a sufficient level to perform those functions adequately. That's why we take pred - to balance out the level of the hormone and the level of inflammation. That balance may vary over time. Experience will teach you what is a sign of a flare and what is a sign of the effects of tapering your pred dose.

PMR won't kill us. When we take our medication and supplements, eat a well-balanced and healthy diet, take care to get sufficient rest, and engage in light to moderate physical activity and exercise that minimizes the risk of injury, we live pretty well until the thing burns itself out. You'll have good and bad days along the way. But we get better.

We're here for you when you need to vent. But nothing anyone here can say will substitute for the advice of your medical team. Be assertive with them and make sure they hear you so they are dealing with your symptoms correctly. Write things down in advance of your consultations so you don't forget anything. This helps your medical team know more about your issues, and helps them deal with them. They can't possibly know things about you that you don't tell them. You might consider keeping a food diary too, since some "allergic" reactions manifest themselves as anxiety. You might find some patterns there. Don't forget to record your medication timing and dosages as well. Patterns can emerge from that, too.

The most important thing to remember is that with time, care and treatment, we get better.

Hoping this helps...

[SheffieldJane]

You might find Mindfulness easier. Rather than emptying your mind, you actually concentrate on what is going on in your body from the top of your head to the tips of your toes. It does show you where your areas of tension are and you can release them. I found it unusually effective. If you can get to a class, that really helps, but I am sure there is guidance on the Internet. Anxiety is really horrible and the more you fight it the worse it feels. X

[Libertylane in reply to SheffieldJane]

Thanks. Have tried mindfulness with therapist and on internet. Not good at it especially when anxiety so high. Will keep trying. Too many things up in the air now concerning GAC etc

[SheffieldJane]

I thought Good-Grief gave good advice to you. A bit like putting the anxiety on the shelf saying, this is not me, it is my illness and the drugs and it will pass. It does work. I am often experiencing weird symptoms.

[shazstep]

I am sitting here shaking as I write this. I just had to make appts with doctors and nurse. Somebody not so long ago suggested shaking the whole body. I find this to help somewhat. If there is something I need to do I find I have to do it there and then or I can't relax. My doctor has also put me on a relaxant to take when needed.

[Thelmarina]

Meditation is a discipline and often tricky to do on your own. Then you feel even worse because you think you should be able to do it! I would recommend yoga nidra. This is called yoga sleep - a

conscious state of relaxation although some people do fall asleep! It’s a guided meditation so you are told what to do and are not on your own. You lie on the floor, slim cushion tucked behind your head if you wish and a rolled blanket under your knees if they are stiff. You wear loose clothing and cover yourself with a blanket so that you are warm and cosy. You can find some yoga nidra practices on YouTube. Choose one, shut your eyes and let your guide do the work. You will feel resistant to begin with because it is so very very hard to even start to let go when you are tense or anxious. Gradually, as you start to breathe deeply, your muscles start to relax, and then your mind is taken up with following instructions for 20 minutes or so and you give your brain a rest from its usual circles. It’s just a thought. I practice yoga nidra and am always surprised to discover just how much tension I carry! Cherish yourself a little. 🌺

[S4ndy]

Please go and see your doctor. Pred was causing me to have extreme anxiety at the beginning and all my drugs had to be changed to help me cope with that. So that's step one as they say.

Step two: live for today. This is hard at first but a beneficial practice if you can do it. So only concern yourself with how you are feeling in the present. Don't look forward or back. Plan just for the minutes and hours not for days and weeks.

Step 3: Meditation. Its hard to get started on your own. I have been practicing meditation for 8 years and still the monkey runs wild in my mind sometimes. I recommend that you look up Which Naht Han on You Tube and listen to his mindfulness meditations and there's some great talks too. It doesn't matter if you are not Buddhist as the techniques apply to people of all faiths or none. You may even be able to find a group local to you as its good to practice with others. Note the word "practice", we all practice because its hard and no one gets to still their mind without lots of practice. You could also check out Plum Village on the web or YouTube as there's lots of stuff there too.

Step 4: The most important thing, learn to relax and be easy on yourself.

Just for today look up " The Great Bell Chant" on YouTube and just listen to the song and relax breathing deeply.

And always, always remember that this too will pass.

And if this is not for you then, perhaps, my reply will help someone else xxx

[Libertylane]

Just not coping at all. Thanks for reply. All your meds changed or just anxiety meds? I am in limbo about diagnosis. Have symptoms but biopsy(after 6 days of 50 pred neg and sed rate and crp back to normal after. I think rheum thinks all is well and I don’t have crp. Can’t get in to talk to her yet in person so I fear blindness if I stop pred etc etc goes on from there. Gp put me on pred as precaution. Freaking out everyday. Pred health side effects too.

[S4ndy in reply to Libertylane]

My anxiety and depression meds were changed and some of my other meds. I was on Prozac but the combination of prednisolone and prozac made me really jittery.

So first of all came off Prozac and took 50mg Sertraline instead. Taken off Gabapentin (went through withdrawal with that) and took 10mg Amitriptyline at night. At the time I was on 30mg of Prednisolone which was dealing with 75% of my pain. This was March 2016. In June 2016 I had an enormous panic attack while out with friends. I drove myself to GPs surgery with no appointment and had a meltdown at the reception desk. They calmed me down and I saw the duty doctor who upped the Sertraline to 100mg a day and the Amitriptyline to 50mg at night to help me relax more. This combination helped and I am still taking that dose today but now only on 3mg of Pred.

One of the things I can relate to is your inability to talk to your Rheumy. I had to change GP early on as mine retired. Although my Rheumy and GP are both great, I couldn't explain things at my appointments, my anxiety was getting in the way. So I started to keep a daily diary. Just before seeing my GP I would look through my diary and pick out the things worrying me and make a list. I then handed the list to my GP. He then knew what was bothering me and could reassure me. I did the same for my Rheumy and to this day he expects a list from me Nowadays I am mentally more stable but still find writing notes helpful for appointments and due to the long gap between appointments in our NHS, my Rheumy asked me to write to him with updates in between and he replies with advice. I appreciate this and doubt that many doctors are like this

Things do get easier. There's now some question as to whether I have another rheumatic condition along with PMR but my Rheumy is not making a diagnosis just yet as he wants to do some further tests.

As for GCA I admit to being concerned about having that as I had symptoms of jaw and tongue pain early on. No headaches though. My Optometrist checked my eyes for signs every six months but now we are back to a 2 year check up unless I get any symptoms. My Rheumy didn't do a biopsy as I had been on 30mg of steroids for about three months before I saw him and so he said it would be a waste of time. My blood markers are always elevated whether on 30mg or 3mg of Pred. It hasn't changed and therefore my Rheumy goes on my symptoms only. This is why he thinks there's something else going and wants me on a low dose of Pred before trying to determine what else is happening. A bit of a giveaway is that painkillers now work on my pain whereas only Pred would help and nothing else would ease the pain.

So I think what I am trying to say is try to find a way to communicate with your doctors which suits you. It may need a bit of cooperation and detective work to sort out what's going on. Just take each day as it comes and try to relax. I know its hard but this too will pass xxx

[Libertylane in reply to S4ndy]

Thanks

[anutycrixp]

I find when I'm anxious all the "what I should,could do" thoughts are almost impossible to do when needed most! I now talk myself though a routine[ e.g. like get dressed,eat breakfast,put on shoes etc] in order to do simple physical movement.This for me is walk quickly around the block singing/chanting or counting steps as I go [not out loud!]get slightly breathless..on return note 5 simple tasks e.g. domestic stuff,garden or whatever but something to do,achieve and tick off list! Its the physical doing of mindless tasks that helps,dusting,weeding,hoovering.Radio 4 helps block relentless thoughts.Having exercised and achieved usually feel able to get on with the day.When calmer practice relaxation,mindfulness whatever.These things take practice to work.If desperate stand still,breath in and breath out counting to 5 dropping shoulders as you do.Do this a couple of times then shake arms and hands as if shaking off soapy water. All this stuff takes less time to do than to write! good luck!

[Lanakay]

I have had an anxiety problem since about menopause time. When I was on my starting dose of prednisone I was ok but as I started tapering it was through the roof. I finally made an appointment with a geriatric psychiatrist and was prescribed 1mg lorazepam as needed. I don’t have to take it every day but I have it if I need it. Knowing I can if I have to helps.