What is my new normal?

About 4 weeks ago I traveled to California from Illinois for my son's wedding. (about 6 hours on two planes) Having PMR for over a year now I paced myself carefully before and during the wedding and days before when visiting with my kids. The evening after the morning wedding I caught a stomach virus and ended up being taken by ambulance to the ER for iv s and tests. I was vomiting every 15 minutes most of the night. Husband rescheduled flights and ride home from airport. We left that evening and got home early the next morning. Here is the question. I have cut back to 6 hours a day at work. The first week home I only worked half days. I now have a slight cold. When will I get some energy back? Fatigue has never been a part of this disease for me. It now seems I don't have as much pain but more fatigue. I just feel miserable. I thought I would recoup in two weeks but now I just don't know. I lay in bed and pray at night to make it thru the next day. All help welcomed. Thank you PMR and GCA friends. (I needed the rant and hope my foggy brain is working)

24 Replies

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  • I'm so sorry you are not feeling well. Each of us find this adventure just a bit different. I find that I don't bounce back easily when something disrupts my equilibrium. I think you need to give yourself more time to recoup before you begin to worry. Traveling and the wedding - all the get togethers, while fun are tiring. A stomach bug which comes with dehydration is exhausting, more travel and a cold? Of course you are exhausted. Give yourself permission to just rest! Look at your photos and enjoy the memories.

  • You just have to go with the flow. Sadly the tiredness is frustrating but there is no magic remedy Rest and build up slowly

  • Thank you

  • Thank you

  • I have had PMR diagnosed for 16 months now, and, like you am still working. I have cut my hours to about half time, but am finding fatigue the biggest problem. Enormously frustrating.....With the benefit of hindsight I feel I was LESS tired this time last year than I am now, even though I have had to bounce my dosage back to 15mg again.

    I guess you need to allow yourself some more recovery time just now. And then pace, pace, pace. Difficult though isn't it when you have thrived before on being busy?

    I hope you feel much better soon.

    Mary

  • Thanks!

  • There is an old fashioned word , convalescence . You will get much less fatigue in time however it sounds like your body is pleading with you for more time to recover. It's said, a well person takes a day for every hour change to recover from jetlag, suspect us folks probably ought to at least double that and more.

    Take heart in the big scheme of things a few weeks is very little time. As said above indulge in the memories for now.

  • Thank you!

  • So hard isn't it ! - I can imagine your frustration and the feeling "will this every end?"It will get better but perhaps not the same as before as I find this illness often morphs into different symptoms- more or less fatigue, more or less stiffness, more or less pain, and for me the onset of GCA. I feel you just have to go with the flow- easier said than done. Eat well and sensibly, walk a little if you can, read and watch things you enjoy, see folk if you're up to it for short periods, and start moving in the slow lane. I think you will then find you are slowly able to do a bit more but you have had quite a few events:- with stomach bug, wedding and all that entails, although lovely, and now a cold. Try to be patient with yourself and have hope that this eventually will pass. Jackie xx

  • Morphs yes!

  • Your adrenal glands are in hibernation - you don't do stress well at all and it isn't your fault. If it was norovirus you caught - did anyone else at the wedding have it? - even if you were healthy it can take a week or two to get over it. You aren't, I'm afraid. And you were travelling. And you went back to work.

    When I was 21 I got food poisoning/norovirus on my way home from my honeymoon. I had to go to work, get a sick line or lose pay for the entire time so went to the doctor to get signed off. I could barely stand, never mind walk. He treated me as if I just had a hangover and it was my own fault, get to work. They sent me straight home. I spent a week in bed - I was young and healthy.

    It will improve eventually - the PMR does seem to slow down for most people - but in the meantime...

  • My son said he sweated thru the sheets the same night

    The groom! Don't know what he had.

  • The flu and colds have taken healthy people much longer to recover from. I'm in California and stayed home all winter to about people. My PMR started to be obvious after a plane trip across the country that took 16 hrs real time. Flying is a major stress. It may take a month to recover. Maybe not. But don't worry. Time to heal.

  • I do find flying the opposite of relaxing

    Thanks

  • I recently canceled a trip I had scheduled in fear of catching something on the flight. I am a former flight attendant so I know all to well that even the healthiest of people often catch something after flying. Unfortunately people travel sick all the time. I was diagnosed with PMR this past Dec and unfortunalty back up at 20mg and just didn't want to chance it with a suppressed immune system. I heard from many that recovering from a cold with PMR takes much longer. I've been lucky and have not caught anything so far. Yes, fatigue hits hard. For me it hits around 3pm after a full day of work. I listen to my body, rest an hour and regain my energy to prepare dinner. If too tired we order in. Thank Goodness you were able to enjoy your son's wedding! Feel better 😊

  • I've yet to catch anything on a plane even on pred!

  • PMR has made me a bit on the nervous side. I traveled all over the world prior and these last few months I'm finding myself not wanting to go far from home. Maybe it's because my body has not adjusted yet? Some days the flu-feeling and burning back pain stops me in my tracks. I couldn't imagine getting on a plane just yet. Staying positive is a challenge everyday which is why I push myself to continue to work but even that is getting more difficult. Thank goodness for this forum, especially PMRPRO, Dorsetlady and so many others for your knowledge and support.

  • I travelled (and worked) with PMR and no pred - not diagnosed and there wasn't a choice! So once I was on pred - I was cooking on gas!!!! In fact, the rheumy who didn't think it was PMR gave me a 6 week taper of pred to carry me over a planned trip to the USA. Less than 6 hours after the first 15mg dose - I rose up and walked, literally. He wasn't convinced - luckily a different GP was :-)

  • Last year before diagnosed I traveled to Costa Rica. I was never so sick and had to succumb to a wheelchair at the airport. I was mortified. It was such a shame because I knew before setting foot on that plane I shouldn't be going on vacation but didn't want to disappoint my family. I will never not listen to my body again!!! LOL I too remember the day I "rose up and walked".

  • I now "succumb" to a wheelchair for travelling - I deliberately request airport assistance. In a small airport I don't bother but for travelling to the US and the prospect of standing in long immigration queues and long walks before and after in large airports it is perfect. You skip the long queues - usually being taken through the crew lines - and they know where they are going. No racing to get to your gate.

    We had a tight connection in Chicago O'Hare and I was a bit worried - so I asked for assistance. I was picked up at the plane, accompanied through all the "stuff" including checking in for the next plane and was delivered to the boarding gate with an hour and a half to spare! It all means I arrive at the other end in a human condition - even with a 24 hour travel day. And they sling the heavy cases around. At the end you give them a tip (maybe, not always, the girl in Munich was gone before we could do anything).

    You wear glasses when you can't see well or take the bus instead of walking into town - what's the difference? Why be mortified?

  • I did blame the airplane for whatever I caught. The wedding was wonderful. It was only later that it was very bad. The bride and groom took us to their house for me to sleep while we waited for our plane. The airline was very kind and switched our flight for no charge.

  • I will get a wheelchair when I fly again. I was sick running to make connections and had a meltdown in the last airport.My husband quickly found me a wheelchair. 💓

  • Last time my almost meltdown was between the carpark and the check-in! It was Lufthansa (we thought, that was all we could see on the tickets) so went to the upstairs desk. To be told it was United. Whose check-in was downstairs, hidden in a corner. By the time I got there I just wanted to die in a corner! Coming home I accepted the wheelchair to the car very gratefully!

  • Fatigue/PMR/Corticosteroids: presumably you would have been on prednisone or prednisolone.... have your doses been carefully monitored? Any chance of adrenal deficiency? More input is needed in this regard. During periods of stress(traveling) or illness, I would consider upping your Prednisone dose as per the advice of your treating physician.... what dose are you on now?... I've also been helped by some supplements.... but in regard I make very few recommendations since documentation of efficacy can be questionable.... finally the type of input that is needed includes your present level of prednisone, sed rate or CRP, hematocrit and hemoglobin and metabolic panel.... in other words more clinical history is needed before any recommendations can be taken seriously... don't listen to anyones input with regard to your PMR status when it's derived from incomplete data.... bottom line..... traveling and a viral illness may put you In harm's way if you are relatively adrenal deficient...

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