emphasized text I am open to any treatment that will give relief. Especially late at night or early morning waking up. I hope we are closer to at least treating the pain and or preventing the pain??
I am open for suggestions…
Thanks
Michele
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A new doctor specializing in fibro had new treatments I have not encountered in 20 years of fibro. I was put on Rayos - a time release prednisone med, Sprix(nasal nsaid), Norflex & medical food Rhuemate. I had one of the worst flares in 20 years - included new companion conditions - extreme skin sensitivity, itching, hives, very dry skin as well as severe pain and anxiety. After one month my pain went from a 12 on a 1-10 scale to about a 2 or less. My skin sensitivity was gone. This doctor has specialty pharmacies that will accept what insurance pays, I did not have to pay my share. I was happy to have a new med regime instead of the usual fibro treatments.
I was taken of my Tramadol that was the only thing that helped with pain for over 20 years. All this opioid stuff scared him and he refused to give me any more. I knew it was coming and had hoarded the pills to make them last as long as possible. I weaned myself off them over a year, as I took less pills, I got more pain, as my pain increased my blood pressures increased. He still would not do anything and other pain dr.'s were not much help either—they’re all scared. What ended up happening, I ended up in the hospital for 3 days with my blood pressures and heartrate too high. They put me on Tramadol.
The cardiologist said my blood pressure being high for so long caused heart damage.
I now had an MI. I am a no code, and I can not tolerate another surgery. I went home under Hospice. They put me on Morphine, 15 mg every 12 hours and Lorazepam 0.5mg every 6 hours. I am mostly pain free for the 1st time in over 27 years! Of course, I sleep about 12-14 hours a day now—making up for the over 50 years of no sleep and I am happy! I’d rather sleep than cry in pain. Don’t get much housework done, but, oh, well! My heart is weak and I have to be careful of what I do, if I move too fast my blood pressure and heart rate go up—that’s when I take the Lorazepam and it brings it down. I do have nitro on standby if needed, but not so far. I have not felt this good in years, but now I can not do much, physically, or my heart rate goes up! Can’t have everything. They are considering freeing me from Hospice and into home care instead as I am pretty stable now. I don’t know if Morphine at this low rate is available for regular home use or not. I was scared of using it as it usually gives me hallucinations, but that is the shots at a higher dose at hospitals. I’ve had no reactions and have never felt lightheaded or had delusions of any kind. I am incredibly grateful for this! If my heart was not damaged, I could really get some stuff done around here now!!
For me medicating with CBD was great for the pain at first but as things progressed my pain got worse. 2 years later I now use CBD/THC with Tramadol daily. At night I switch to a marijuana strain which helps me sleep. 2am through the mornings are the worst for me.
Finding the best CBD/THC strain for your symptoms my take some time. I recommend the Sativa strains for day and a Indica for night with a 1:1 ratio of CBD and THC for Fibromyalgia. Add 25-50 mg of Tramadol for flare ups. No alcohol.
You might try Girl Scout Cookies Gsc at first.It has a high CBD content.
Sorry for your pain.
Hi Michele,
I too take a mix of tramadol and gabapentin but my biggest tip for waking up in the morning is to wake an hour earlier. Sounds counterintuitive but that hour gives me time for my meds to work, I get to sit down have a cup of tea and centre myself before my kids need waking for school and the madness begins. I "treat"myself to a read of a book of watch a bit of a show on Netflix and it feels like “me time”. Something to look forward to instead of dread. When I do have to get moving and get ready my meds are working, I’m relaxed from my cup of tea…it so makes a difference. Sometimes little changes to the way you do things can make a big difference. You just need to experiment and see what is good for you.
Hi Michelle, I’m on Lyrica but only take it at night because it makes me dizzy. During the day I use a Cbd tincture of 750 mg strength. I take 50 ml in the morning and 50 ml in the evening. I can manage the pain fairly well with this regime. I also try to exercise in the water 3 times a week. I feel like I get good sleep on the days I can get in the water to exercise. Good luck to you and keep trying until you find something that works for you. It’s out there!
Hello Cathy, It was a pleasure to hear from you. I hope you slow down on meds.
I am finding out the side effects of the meds are just as bad as the effects of the
disease. Falling asleep is a problem, my mother use to live with me. My mother,
passed away a few years ago and I am still having some problems dealing with it.
She would take care of me when I could not care for myself!! She became sick
herself and before I knew it she passed away. I miss her so much!!! Sometimes
I wonder if they see us. I hope she is at peace, she was always getting upset when
she saw me so sick. My mother would say “I wish it was me”!!! Oh, I told her do not
say that, please!!! When she was dieing she said to me, “can I go with your father now”? Wow, now I look back and I know she lived long because she had seen how
very sick I was. I was in so much pain and I also have a morphine pump implant.
The pain still comes, not as bad but Pain has No Conscious. I think you will agree.
So, here I am on a Saturday and no one is here but me. My son made a life for himself in Co. and has 2 children of his own. I do not say anything because he gets
upset, because I tell him not to make the mistakes I did raising him. He was in denial. Now, I pray that my life will not be linging forever because who wants to live
to be old and sick?? Not Me!! I know you exercise and in the water is great, low impact with being submerged. Just listen to your body, I have been running a support group since 1982 and I had to stop because it was too much for me. I am writing a book and I need to finish the last chapter. Well, I hope you keep in contact. Please know the best way to contact me is by email.mickeyitaly3@aol.com
Many Blessings Cathy
Always Michele aka Mickey
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I can relate to so much in your post and one from CathyO. I did not do well after I lost my Mom. It was one thing to be in pain and have my Mom with me and just to know she was my biggest cheerleader. She raised me and knew that my stillness was not my being lazy. She knew my character and my ability to usually push though the hard times. When she passed I lost my Mom and my best friend ever. My life has changed so much except for this pain that never goes away. Like CathyO I was doing water in a heated pool at least 3 or 4 times a week and the feeling of weightlessness was so very refreshing. So much of the pain was relieved. I was also on a 25 mg Meloxicam and a 60 mg of Cymbalta and my pains were manageable. Then my kidneys stopped working properly so my Dr took me off NSAIDS. I was told to take Tylenol for pain relief. At the same time, the aquatics place shut down and I was unable to exercise in the heated pool. My back and legs went back to a 12 pain. All Drs, even my Rheumatologist would not prescribe pain relief pills. My back and legs are still at a 12 and the rest of my body has climbed up to a high 7 or mid 8 on a daily basis. If I am moving, I am hurting. 24/7 of pain and that does not make me want to get out of bed early when I will only increase the amount of pain that wracks my body. I often think of getting off all of the pills I am taking (I also have Lucocytoclastic Vasculitis and Alpha Gal Allergy) and just ride off into the sunset. It would be a long time before my kids even knew I had passed.
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