Fed Up, fat and feisty - will CBD help?

Posted , 12 users are following.

It's 4 am and I am about to take my 8 mg of prednisone before going back to bed to snuggle down again. Before going to sleep last night I took the third dose of CBD oil which I hope will help me to taper the prednisone. February marks the beginning of my 5th year of PMR. Because I have been unable to taper below 8 mg without a flare the Rheumy wanted me to take plaquenil as a steroid sparer and when I refused she kind of lost interest in me. My GP suggested that I apply for a licence for medical cannabis. Meantime I made an appointment with a Pain Specialist in the hope that I would be able to get a licence to try medical cannabis - but he seemed to know little about PMR and even less about cannabis. He said that I wouldn't get a licence until I had been unsuccessful for a year of trying narcotics and analgesics for the pain. Since I refused to go down that route he wished me luck and farewell. And now, with 20 kgs of extra weight, stiff joints, aching body, wheezy breathing, low energy and feeling like an old woman with a raging appetite I decided to try the CBD route. I ordered the cbd oil from a reputable uk company - It is expensive but if it works and I manage to taper the steroids maybe I will regain my health. Maybe I will be able to exercise again and walk at a normal pace. I finally came to the sad conclusion for me that I no longer have the physical stamina to work and - though I am telling my clients that I am taking time off - I don't believe I will ever be able to work again. This is maybe the most difficult admission to make - and I am struggling with that reality. As my 70th birthday approaches and I can't keep up with my toddler grandchild, I am angry and frustrated and wonder what will be.......

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13 Replies

  • Posted

    Hi ricky -

    Sorry to hear about your story.

    I have had PMR for about 2 years now and I have tried both CBD oil and medical cannabis since I qualified for it here in the states.

    I wish you luck and hope it helps but I did not find either one helpful.

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    • Posted

      Hi Rocketman,

      Thank you for your input - sorry and a bit disappointed to hear you weren't helped by the cbd or the medical cannabis- so are you managing to taper the prednisone?

      Ricky

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    • Posted

      ricky-

      I have tapered some but not as much as I would like at this point.

      I also have had to increase on several occasions due to flares so it's been 2 steps forward and one step back.

      Have to keep plodding along since there is no other choice is there ?

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  • Posted

    I hear you sister. I'm five years in next month and turn 70 next month and struggling to get below 10 mg. Fed up beyond belief right now.

    I too plan on trying CBD oil, but not until I return home to Canada from Panama in May.

    Good luck and please let me know how you get along with it.

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    • Posted

      Hi Jean,

      sounds like we are on a very similar track and in a very similar mood! I do hope that I will be able to report positively. One thing I notice is that I am sleeping better and am not waking up from pain in the night..... so that might be progress.

      Hang in there!

      Ricky

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  • Posted

    I wish you luck. Our local pain clinic says they are facing great problems over medicinal cannabis which is approved here - so many of their patients are demanding it and there is no proof it will help in their conditions.

    My husband took early retirement from the NHS because he couldn't face it any more - all the things he enjoyed about his work had been taken away - and both of us worked freelance and very part-time for a few years before our work slowly dried up so it was a slow process. We are both still involved in editing a scientific Proceedings every year, no pay, just the trip to the meeting paid for, which keeps us out of mischief from August to xmas each year. That is more than enough and suits us fine.

    But I had a toddler grandchild when I was a mere 50 and pre-PMR - I couldn't keep up either!

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    • Posted

      i had my first grandchild three years ago aged 66 i wept as i could not run and play with him because of the pmr/ra but now i can sit and read him stories in his cosy corner. watch him ride his little bike in the park gives both me and the OH a lot of pleasure we waited 15 years for him.

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    • Posted

      Hi Eileen,

      Work is such an important component for me as a freelancer that the realization that I can no longer do it is disempowering and even affecting my self-esteem! However, I, too, will gradually get used to it and find others ways to keep out of mischief !

      It is comforting to know that other grannies couldn't keep up - even without pmr!

      The question of whether or not others can be helped by cbd or medical cannabis is not that different from whether or not they can be helped by the big pharma medications - it is my understanding from what I have read that the cannabis (unless it has a thc component where more care has to be taken with dosage and mental state) will do us no harm - whereas the possible side effects of the unproven steroid-sparing medications are really terrifying.

      It is a long journey we are on.....

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    • Posted

      Did it affect my self-esteem??? I don't think it did - nor OH's either but I suppose it is difficult to know. I suppose too that we were very lucky to be able to just slow down over a long period of time although I was very annoyed at the way the company I had worked for for the best part of 30 years just stopped sending me stuff after the financial crisis led to them deciding their staff spoke good enough English to also write in English. They didn't of course and I think that led over time to less and less work coming their way because of the poor language standards which then had a knock-on effect on what I got.

      But I do quite like doing the seasonal menu for friend with a hotel! Hearing comments about the standard passed on is nice ...

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  • Posted

    Hi Ricky

    I'm on my third bottle of CBD oil, and going gang busters....I am now on 2mg pred, reducing 1/2mg every week. I live in Australia so my chances of getting the medical stuff is slim to no way. I have spoken to both GP and specialist and they have both agreed the oil is helping but getting them to help me is like asking them to go to jail for me or something ???? I also have RA which is the defining problem with me now, but I still have to travel the tapering process for pred. I am still trying for the legal medical cannabis oil, but in saying that I will obtain illegally if I have to. Good Luck and I hope the CBD oil works for you....and/or the medical cannabis.

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  • Posted

    HI Ricky, I certainly know what the fed-up, fat and angry are like. I am afraid I have lost my feistyness as I have no energy to spare for it. Sorry I have no knowledge of CBD but I did look it up and my only worry would be that it can cause liver damage. I already have an increase in liver enzymes so i would have to think very seriously about using it. I will be 72 on the 15th of this month, and can understand what it is like to be unable to keep up with the grandkids. My granddaughter is 10 and last Oct. for halloween I flew to my sons, rented a scooter and went out with her for halloween. She had been asking me to come for a few years and I was always too tired and could not walk. What a treat it was, she was so kind and careful to make sure I was okay and enjoying it. For me the scooter has improved my life so much in the good weather months, I can go to events with people and not get so tired. My husband and I are also raising our 14 year old grandson because of problems that his mom and dad are experiencing. We have had him since age 6. It is especially difficult trying to ensure that his experiences are not compromised by my illness.

    I noticed you stated that you experience problems with wheezing, is that new with your PMR. I also was experiencing that problem along with shortness of breath with any type of activity. It is better now with a steroid inhaler.

    Do you think your symptoms could be from a flare-up of your PMR and you really need to be on a higher dose of your Pred. to control them? I am not sure that tapering your steroids will bring back your health if the underlaying problem is still there.

    I understand your anger and frustration as I often exeperience it. What has helped me lately is reminding myself of what I have. A roof over my head, a nice bed to sleep in, financially in okay shape to raise our grandson, althouogh probably no more nice holidays,but what the heck, I am not well enough to do that anyway. Also living in a country that is not at war. I try to be grateful for that every night, things could be worse. Also my two wonderful grandchildren.

    Take care, I truly hope you begin to feel better soon. It is not a fun illness to get, people I find often do not understand and always say to me, you do not look sick. What I feel like saying to them is not sayable on this site I am sure.

    Carol Ann

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