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Long day, bad day

Posted , 12 users are following.

LisaCACO
LisaCACO

today was one of those days where you wake up and you know it's just going to go on forever. Woke up shaking and it wouldn't stop. Snow made the drive to my daughter's school absolutely horrible, then I had to drive one of my cats to the vet because he apparently believed he was a kitten and not an 11 year old and sprained/pulled a tendon. All of this on a day when I was clearly having a very shaking body day-had to use a cane. Given the schedule, I had to delay my pills in order to drive, which my head did not like (no driving on gabapentin).

Then zoom downtown to the Rheumatologist for my visit. my health has improved since the last visit, but then again, it pretty much had to. The doctor encouraged me to speed up my tapering of prednisone (jumping 10 mg at a time instead of the 5 mg i'm doing currently), but I said I was happy going very slowly, thank you. She reiterated that she'd work with me on my schedule but I could jump if I want to. *sigh* I think she wants me to jump 10 mg lol. 

long day, edema in arms and legs, shaking in arms and legs, no chance to take a nap, running around all day. ugh. hate days like today. so glad the day is over. just came here to complain smile.

2 likes, 49 replies

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  • julian.
    julian. LisaCACO

    Posted

    hang it all, forget the snow, that will melt, don't forget the daughter, she'd get upset and daughters are valuable, not sure about the kat, maybe it will grow out of it.

    But hang it all, go with the flow, see your doctors 10mg and raise her another 5 to 15. That will put her in her place. Go for broke! Don't let them wear you down.

    Then again .................. have a lie down and look forward to a shorter day tomorrow ........

  • Mrs.Mac-Canada
    Mrs.Mac-Canada LisaCACO

    Posted

    Sorry you've had such a hellish day.  unfortunately you have had to do everything that PMR hates.  I haven't read all the posts here but I seem to remember you having other medical issues as well as PMR.  

    It sounds like you need some help.  Do you have anyone that understands your situation that you could call on when you're having a really difficult.  Does your daughter have a friend that she could get a ride with? 

    As far as the cat goes, I am a real animal lover but I have learned that my health is more important than theirs because other people are counting on me.  He probably could have waited a day with a little extra pats while cuddling with you while you rest.

    it is so important that we rest and be kind to our bodies otherwise PMR will bite back even more.

    As far as the pred goes it sounds like you need a new one Rhuemy or at least let her know about the Bristol report and reduction method.  At lower doses even that is to fast for some (me included). I reduced only 1.5 over 3 weeks (reducing from 4 which I'd been on for about 2 mths) and have had my worst flare and now have been at 10mg for 3 weeks and still having symptoms.  

    I hope you can get some help and rest so you feel better soon.

    Hugs,

    Diana

  • margaret22251
    margaret22251 LisaCACO

    Posted

    Dear Lisa , i know how you feel, this morning i woke up to the cold sentation in my neck and you do worry, but Eileen did say that worrying does not help and we have to try and relax, which i find it hard to do as you imagine all sort. i did have a good nights sleep though which is something.

    I think you need somebody to talk to and all the ladies on this site dont seem to mind any body complainimg as we all learn this way, i am learning more and more by following this site.

    Hope you have a better day today.

    REGARDS mARGARET

    • pam41628
      pam41628 margaret22251

      Posted

      Hi Margaret,

      Although I have a mild case of PMR one thing that is happening to me is I wake up every hour or two, all night long. I usually walk around a bit, try to relax my tight achy arms - stretch ( which is pretty impossible) and then heat up a grain bag, sometimes I use a cold pack - but its not nearly as relaxing, and then go back to bed. I usually fall asleep again, but then wake up 1or 2 hours later...I have tried using melatonin at bedtime, hasn't helped. Any suggestions?

    • margaret22251
      margaret22251 pam41628

      Posted

      Hi Pam,

      My friend suggest Lavender oil on my pillow as this is supposes to relax you when you breathe.

      My trouble is my husband grumbling as i keep him awake, so i try and go to sleep but it does not help, so like this morning i have got up.

      sorry i could not be more help.

      Regards Margaret

    • carol16456
      carol16456 margaret22251

      Posted

      Because my hubby has prostrate problems and I like you do not sleep particularlywell , we have decided to sleep In separate rooms . This means I sleep more than I use to because I don't have to worry about waking him up , and can read , make a drink whenever I want to which gets rid of some of the tension which adds to the PMR .I miss his snoring but makes for a more relaxed day .
    • EileenH
      EileenH carol16456

      Posted

      Separate bedrooms - if only! It is a very small flat! But we have separate mattresses, separate duvets (started after he was ill 20 years ago and was permanently cold during a heatwave in July - evenputting the heating on).

      And separate bathrooms as the next best thing. redface 

    • Mrs.Mac-Canada
      Mrs.Mac-Canada pam41628

      Posted

      Hi Pam,

      i have tried several natural sleep remedies and most of them only made my head hurt.  

      Because I have high blood pressure and family history of heart disease my GP gave me some sleeping pills (zoplicone). She said lack of sleep leads to many health issues but especially bad for your heart.  I only take them when I haven't slept for a couple of nights so I don't count on them too much.

      i hope you get a good sleep somehow.  You will feel so much better😴☺️

    • pam41628
      pam41628 Mrs.Mac-Canada

      Posted

      Thx Mrs. Mac and others who responded to my waking up often during the night. The good thing about sleeping with my husband is he pushes me up - so I don't have to use my arms. then he covers me up when I get back in to bed...nice guy...Hopefully this situation won't cause furthur difficulties....
    • vanessa66630
      vanessa66630 EileenH

      Posted

      Hi Eileen, do you by anychance know how I can get in touch with Rosemary otherwise known as Mrs G from the New Forest as I also live in New Forest.
    • EileenH
      EileenH vanessa66630

      Posted

      You can send her a private message on here. 

      To send a private message you click on the envelope which is by every post from someone else. That brings up a box so you can write a post just like here and only she will see it. I imagine she has email notifications just like me.

  • carol16456
    carol16456 LisaCACO

    Posted

    After long hearted discution about to move or not to move with hubby yesterday .I don't want to move .I also had a bad day , went for a drive ,came back with shakes and quite a flare up of nck shpulder pain . So understand how you feel . I think we all need to carry a sign saying ' no stress near me please ' I only cut down my preds half mg at a time and aim to drop a whole mg over a month which works for me . Have no real pressure from Doctor just that she would like me to be at 7.5 to 8 mg by August. Hang in there but try to slow up your doctor with her idea of reducing .Good luck
    • margaret22251
      margaret22251 carol16456

      Posted

      Hi Carole, many thanks for your reply it is helping me knowing that i am not the only one who feels like this , people who dont have this do not understand and that includes my hubby.
  • pat38625
    pat38625 LisaCACO

    Posted

    Hi Lisa, sorry you had a bad day yesterday and hope you have a better day today.  I was just diagnosed November last and put on pred.  I have had a few bad days and I have no partner/hubby to off load to or to do things for me.  I have to do everything myself.  I do have two sons, one who still lives at home.  He will be 33 in May and he does help when he can but yet I know my two sons don't understand this PMR or don't want to.  I am a very strong, independant person and have had difficult in asking for help but I have to, something like opening a can with a ring pull.  

    I was having a complaining day yesterday as well, lets hope we all have a better day today.  Take care.    Pat

  • MrsO-UK_Surrey
    MrsO-UK_Surrey LisaCACO

    Posted

    Lisa, I really feel for people like you who have to either work or have children still young enough to care for.  However, hang on to the good news that at least you say you have improved since your last visit to the rheumy, albeit that is no doubt because you are NOT reducing to her schedule but by the slower and safer routine we advise on here!

    Hope you're having a good restful night's sleep as I type and will wake up feeling much better tomorrow........and to a more relaxing day! 

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