permanposies9afl

OT: Fibro help

I apologize for being so OT, but I’m hoping for some guidance. I was just today diagnosed with Chronic Fatigue/Fibro. I know I need to educate myself on how to manage this, and remember several of you mentioning your own struggles with this illness.

My biggest concern now is not being to garden. I cannot imagine my life without my garden. Again, I apologize to all forum members, but am reeling a bit over this, and hoping for some recommendations as to where to begin. Many thanks in advance! :-)

Comments (27)

  • oursteelers 8B PNW

    I don’t have any experience with what you’re going through, just wanted to say I’m sorry and I hope someone on here has some answers that will help.

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  • Alana8aSC

    Do not overdo it. Thats a big thing. I also found certain foods made mine worse. Don't stress. Eat as clean as you can. Yoga helped mine alot. The stretching! But again do not overdo it. You'll start to realize after a while, there will be good days and bad. Weather also aggravates it. Some people cold makes worse, some heat, humidity. Some both. Storms will too.

    Just do what you can how you can.

    You may have another issue that will show up later. That's how it usually works. First I got fibromyalgia, then Sarcoidosis, now blood work is showing Lupus. I've also had seizures since I was 4 or 5. But I got this! You do too! Don't let it get you down. It does bring challenges. Some days you may not feel like getting out of bed, some days you may hurt so bad you'll cry. But you got this! You will beat it , it will not beat you.

    Also have read cbc/ cbg hemp oil or capsule are supposed to work wonders. My Stepfather gave me some to try. It's legal, get the best you can afford. It's thc free.

    I hope this help! Best of luck. It did take me a while to get the attitude I have now and to figure it all out. If you need to talk , I am here :)

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  • Alana8aSC

    It did take years between my diagnosis. Just so you do know. You also may be able to take the medication they proscribe for the fibromyalgia. I cannot because I am allergic due to my seizures, and being allergic to all seizure medication. Your rheumatologist should be able to help. As long as you have seen one. If not, get your doctor to send you to one. Best of luck!

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  • Alana8aSC

    One more thing. From my experience, the weeds don't look that bad! Lol

    Just do the best you can, and get to it when you can.

    I have to keep using firefox, I can't seem to type using Google. Its erasing my words when I hit spacebar. So I keep switching between them,


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  • Vaporvac Z6-OhioRiverValley

    I'm so sorry to hear this. No need to apologize about needing to share! We are here for you! Also, thank you, Alana for sharing your experience and knowledge so freely! What a wonderful giving group of people we have here!

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  • Lisa Adams

    I’m sorry to hear of your diagnosis, Perma. I’m sure you’re in a state of shock right now. I don’t have Fibromyalgia/CFS, but MS has its similarities. I feel the same way about gardening. It’s necessary for my wellbeing. As my illness progresses, I’m able to do much less than just a few years ago. I’m not saying you’ll have the same experience, since our diagnosis’s are not the same. Fibro/CFS affects everyone differently, and to different degrees, just as MS does.

    Alana gives some great advice. I know it’s hard, but try to avoid stress. Stress can really aggravate these autoimmune disorders. Pay close attention to what triggers an increase in symptoms. It could be temperatures, stress, overdoing it, not getting enough sleep, or a even a change in daily routine. I’m sure a healthy diet is also key. (I feel a bit hypocritical, as I’m typing this:-), but we really do need to listen to what our bodies are trying to tell us. If you feel tired, stop. It’s not worth forcing yourself to finish it today, when it could set you back several days afterwards. Sucking it up and battling through that last 30 minutes of the job just doesn’t make good sense anymore. Leave it, and finish after you’re rested up. You’ll be much better off for stopping when your body tells you to. Oh, also drink LOTS of water. It’s so much more important than I realized. If I wait until I feel thirsty, I’m already behind. It took me a while to realize what a difference good hydration made for me.

    Hopefully Ingrid will chime in here, as well. Alana is certainly right about there being good days and bad. When I’m experiencing a flare up, it actually helps me to remind myself of that. I may be experiencing a “bad” day/week/month, but I remind myself that I’ve felt this way before, and made it through. Try not to let it get you down. True clinical depression can creep up on you right along with your autoimmune disorder. If you feel hopeless and sad for more than what’s “normal” for you, get some help ASAP. Depression is very common in the general population, and even more common in those that have a chronic illness.

    I hope and pray for the best possible outcome for you, Perma. ♥️ Lisa

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  • Alana8aSC

    Lisa touched on alot of good ideas, I just couldn't think of. It's hard to remember it all.

    Diet is big in fibromyalgia. Try to eat tge best you can, I stopped soft drinks and tea. I do have hot tea before bed. Low sugar is good. Try to eat foods that help with inflammation. You will find out alot of this as you read up on it. Your body will tell you. Learn to listen. Sometimes it's hard to hear. Just don't let it overwhelm you.

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  • Stephanie, 9b inland SoCal

    Perma,
    Oh so sorry to hear. That sucks! But good to know what you are dealing with. I have chronic migraines and used to have terrible IBS and changing my diet helped tremendously. I think people underestimate the effect diet can have on well being. All the cells of your body are literally produced from the food you eat. When I became really aware of this and started eating foods that were what my body needed, I started to really improve. I still get migraines. I still can’t go outside on a very hot day for long without getting a migraine, but I am doing so much better. The best dietary guidance I have found is by a fellow woman PhD scientist and ALL her advice has hardcore scientific backing. There is so much cutting-edge research being done on how diet effects our health especially gut health and how gut health impacts our overall health and yet there is so much garbage dietary advice out there by people who don’t know how to read the scientific literature. (I work at Caltech and some of this cutting edge gut research is being done there). She understands the research and then tells you about it in everyday language. She will also tell you when not enough is known about a topic to make a determination one way or the other. Anyway, take a look at her website and see if it resonates with you and what you need right now. I thought I would start you out on a place where she talks about fibromyalgia and a light therapy she uses for hers. Again this specific brand she recommends has science backing it. There are red light knockoffs out there that claim to be the real thing, but they are just trying to make a quick buck, so be careful.
    https://www.thepaleomom.com/joovv-red-light-therapy-for-pain-management/
    Also about Sarah
    https://www.thepaleomom.com/about/about-sarah/

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  • Plumeria Girl (Florida ,9b)

    Lisa and Alana gave great advise.
    You should rest , recuperate, eat good and relax during hot and raining days. Don't push yourself and you have to rest. It's okay to have weeds growing as long as you rest. When you feel better than do small steps. The minute you feel weak or shaky, just stop and take a day off again.
    Jeepers creepers, I have to do weeding tomorrow since i blew it 3 weeks or so. I did very small sections but I left one huge bed and I will try to tackle that Sunday.
    Perma when I injured my hand you advice me to take a break and not to push. Now, I am letting you know to take a break and relax . Your roses are getting plenty of rain so that is a plus for you. Rest , rest, rest !
    jin

    P. S....don't apologise for OTs.....:)

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  • hollie9

    I've had CFS/ME over 20 years but was first diagnosed with FM. For the first couple years it was really tough but I've gradually headed out of the woods, not recovered but functional. If you've just been diagnosed I assume you feel really sick?


    You have one of the pioneering doctors and researchers of CFS in Florida, Nancy Klimas. https://www.nova.edu/nim/clinic/dr.-nancy-klimas-bio-page.html


    So here are some sites that help:

    https://phoenixrising.me/ The forum and articles on About ME/CFS, Treatments, Living and Forums are great.


    Pacing helped me the most, here is Bruce Campbell who kind of invented it: http://recoveryfromcfs.org/


    There are many who try to profit from this illness so beware of odd sounding "cures" and supplements. Most doctors know nothing about this illness and don't intend to learn, at least that's what many of my own primary doctors have told me.


    If you'd like to talk or message me, please do.



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  • titian1 10b Sydney

    Perma n' Posies, a friend of mine was getting out of breath just answering her front door. She went to various specialists after some months of this, one of whom told her that her problem was being overweight. She wasn't overweight before she started feeling tired. She was so ill at one stage, that when she was overseas, she had to use a wheelchair. After around two years her tiredness suddenly went away, and the weight she'd gained fell off. She is now back to her old self.

    During this time, I also felt exhausted with the slightest exertion. And had black circles under my eyes if I as much as did 15 minutes walking. This went on for over a year. I thought maybe I had cancer, but no weight loss, unfortunately! The doctors could find nothing, and hinted it was my age. After over a year, I was walking my dog one day, and realised I no longer dreaded having to go up the slightest slope. I saw my friend shortly after this (she lives a long way from me now), and we were discussing it, and realised we had both felt the same.

    Goodness knows what caused it, but I have been back to normal for almost a year.

    I hope this is the case for you. I agree with what others have said: do as little or as much, as you can manage, without exhausting yourself.

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  • bart_2015

    I'm hoping and praying for you, too, Perma. love, Eileen

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  • Lynn-in-TX- Zone 8b (Central TX)

    So sorry for what you are going through Perma n' Posies. I have a family member with FM, and as a result, anytime I see something that references a related medical/research journal etc., it gets my attention. The latest research I have read is looking at gut microbiomes.

    Do you or have you thought of keeping a food diary? So much, not all of course, of how we feel is associated with what we consume. I became very ill about 3 weeks after a minor surgery nine years ago. For months, doctors could not figure out what the issue was and everything began to point to an auto-immune disorder. I think, for me, it was Aspartame. I am fairly certain that I have a sensitivity to it. At an annual visit, my gynecologist, of all people, concurred (my symptoms had led to a lot of neurological and nerve testing). When I thought about it, who sees and talks to women, primarily, day in and day out about their health. He had even started research and began writing about his suspicions. I stay away from Aspartame and have never relapsed. My husband thought he could have Celiacs disease, then he tested negative for it. He was told that it could just be a "sensitivity" to gluten. We discovered that the issue for him is very likely products with yeast... no issues if he stays away from it... (100%)...

    I guess in a long-winded sort of way, and someone may have suggested the same above, there could be triggers like, overwork, your body telling you to rest, and how listening to it is important. My family member who has FM avoids stress, gets 7-8 hours of sleep, does yoga regularly and pays attention to what her body tells her about the things she consumes. She still has FM, unfortunately, but her quality of life improved tremendously by using that strategy. I hope that you begin feeling better soon :(

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  • Melissa Northern Italy zone 8

    Good luck. I'm sure this is an upsetting diagnosis, and the condition difficult to deal with, but one has these shocks, then adapts, and the difficulties become more manageable. I think you did well to post your questions. I hope you figure out how to take the best possible care of yourself.

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  • Lilyfinch z9a Murrieta Ca

    Perma , I’m so sorry you are facing this challenge. I don’t know anything about it but I do want you to know I’ll keep you in my prayers and hope you’ll keep us updated and feel free to vent or talk about it !! I hope you find the energy to keep gardening and using that as an outlet . Our connection to nature is so important for our mental health !

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  • Kristine LeGault 8a pnw

    Perma, . I am so sorry for your diagnosis. My daughter suffered from fibromyalgia for over 20 years. And at 1st because of the pain she ended up taking way too many pain pills she became homebound couch bound with no life and no future and no hope. And then one day she got herself off the couch and onto her treadmill.

    She discovered her Passion for running she found that the endorphins released during exercise less and her pain even though that sounds counter intuitive it really did help her . now you will find your own path as to what you can eat and what you can do but honestly you need to get those endorphins going I guarantee that it will help


    today my daughter is doing a 50 mile run , 50 miles, I can't believe it .10 years ago when she was still on the couch I never thought I would see the day when my daughter would run one mile much less 50

    so my prayers go out to you , that you will find a doctor with great wisdom and that you will find in your journey what works for you.

    .

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  • Perma n’ Posies/9A FL

    I am just overwhelmed by your kindness and support. My heartfelt thanks to you all! I am going to try to stay as positive as I can; the first positive being an explanation for how I’ve felt. I’ve gone from thinking I’m losing my mind to I’ve just become lazy and all over the map everywhere in between, so now that there is a concrete diagnosis I can make a plan. I’m going to read your posts over very carefully. Thank you so much for your love and encouragement. This truly is a very special group of people. :-)

  • Patty W. zone 5a Illinois

    Perma, I also have fibromyalgia and lupus. The advice given here is good. They also touched one of the newer fields of research. Anti inflammatory foods rich in omega 3s as opposed to omega 6s that are pro-inflammatory. Both are essential fatty acids. However today’s diet tends to be heavy with pro-inflammatory acids. Fruits, vegetables and whole grains is one of the best things we can do for ourselves. My heart is with you, keep as positive as possible. The way I see it is that there are many that suffer much worse than I. Not for everyone but for me helps to keep things in prospective.

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  • ingrid_vc so. CA zone 9

    Perma, my heart goes out to you; this has to be such a shock. However, as I always tell myself, at least it's not cancer. By that I mean that it may change your life but it won't end it or shorten it. That is no small thing when more and more people have cancer, and at seemingly earlier ages, or other life-threatening and heart-breaking conditions.

    I was diagnosed with fibromyalgia decades ago, but it is a rather atypical form where fatigue is the main component rather than muscle pain. As I've gotten older it's steadily gotten worse, and there are so many other factors, sensitivity to just about everything, light, noise, fans, heat, the sun, cold, you name it. It's become an ever-narrowing existence, although fortunately because of the internet I don't feel cut off from human contact and the wider world.

    There's really nothing I can add to all the knowledgeable and wise comments that have been given here. I will say, if at all possible accept help with the garden, paid or unpaid, so that what's left for you to do is more manageable and not so overwhelming. It's easier said than done if finances are tight, but even a willing 12-year-old can do a lot.

    Be very kind to yourself, and please know that we're here for you. If you'd like to e-mail me please feel free to do so. Just click on my picture and that will lead you to the contact information. It can be a lonely condition, because it's difficult for people to understand how you can look in such good health and yet feel horrible. Only someone who is in similar circumstance or close to someone who is can truly relate, and as you see there are enough of us here. We also deeply understand how important your garden is to you, and that it has to continue to be a part of your life. I've found that I can have a beautiful and stimulating garden with fewer roses and more low-care companion plants that don't need to be fertilized, divided or otherwise cossetted. Life goes on and one adjusts and, thankfully, we have each other to support us through it all.

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  • bart_2015

    Dear Perma,It's normal to have a period of mourning after recieving a devasting diagnosis. I, btw, have been diagnosed with lung cancer and had a metastasis in my brain, but I don't think this will "end or shorten" my life necessarily. I can even look at it this way: paradoxically, the diagnosis could even give me a better chance at a long life, because the doctors will be keeping a sharp eye on me. The same might be true in your case.Simultaneously I had to deal with being severely disabled by my ruined right hip; the operation had to be put off so that they could Gamma-knife the brain thingie.

    Miracles do happen. I know this,I do believe in them.

    It's been almost a year since I finished chemotherapy, and I am back to gardening with a vengeance,but I AM trying hard to reform my attitude-not pushing myself too hard, above all. Sleeping a lot...doing all I can to avoid stress. I've resolved to limit the amount of new plants I add each autumn, for example, because watering them in their first summer is probably hands-down THE most stressful part of gardening for me. I also pray a lot.

    I really enjoy having my hip fixed so now I can walk around and do things without severe, chronic pain.

    My best friend has had diabetes for a long time now, and gave me the excellent advice that you can't let the disease control and take over your life. But as I said before, there is a period of mourning to go through,and one does have to face the challenge of modifying one's approach to doing things. I think you will definitely be able to get back to gardening! just maybe not immediately, while you adjust to this new situation. Also, please don't feel like you've got to be all"positive!!!" and "go get'em!!!". Actually, I am hoping and praying for you that this attitude will come to you eventually, quite naturally, on it's own. But it takes time. Don't force it or fake it. Love, Eileen

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  • totoro z7b Md

    Perma, I am sorry to hear about your health. Don't lose hope.

    I also developed CFS after a severe mononucleosis infection over a year ago which can happen with viral infections (my ID doc said the CFS after mono can last up to 2 years). I am finally feeling better.

    Lots of good advice here. Agree with diet with as little chemicals as one can afford, lots of sleep, prayer, meditation, stress management skills (as one cannot avoid stressors), yoga. Perhaps do a food journal to see what foods trigger symptoms. I think soy sauce is one of my headache triggers due to cerain chemicals in it. I also took detox herbs prescribed by my holistic MD, but I am not sure if they really had any effect. I also did posture/ergonomics improvement, acupuncture, massages and cupping which really helps with my back/shoulder/neck myalgias and trigger points/knots.

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  • pat_bamaz7

    So sorry to hear this news! My aunt was finally diagnosed with fibro decades ago back when it was virtually unheard of. She was so happy to have an answer after many years of being told nothing was wrong with her. She is able to reasonably manage hers with diet, massage and acupuncture.

    i saw this post online this morning and thought it inspirational:

    To anyone that feels like giving up: some days you feel defeat. You try so hard, you get strong and motivated and after all of your efforts you’re once again let down. Pain is something not many will talk about. Pain of the past, pain of the present, and fear of pain in the future. Let me tell you now you are being too hard on yourself. Your efforts didn’t fail. Your motivational tactics still work. You’re still strong. But sometimes things fail. Not because of us, but just because that’s the way it’s meant to be. It’s often quite ugly to examine, but quite useful nonetheless. We all have pain but suffering is something we control. So when you think about giving up, think to yourself, “what would happen if I didn’t?” The answer is, you will never know if you do. You can give up anytime. What’s the rush? Let’s see what tomorrow brings together ♥️

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  • bart_2015

    Another thing that helps me, Perma-"doing" the I Ching . Now, your first response may be "you nutty Bart! that's just hocus-pocus! Oracles, forsooth!" But it isn't fortune telling, not at all. Carl Jung thought highly of this ancient book of wisdom; it works on the basis of synchronicity,and helps you get in touch with your unconscious mind, which can provide you with precious information to help you guide you on your way on the search for your Self. I have the book itself, but here's an on-line version, and the person who interprets the hexagrams is pretty clearly a true scholar and has deeply studied and contemplated the meanings of the hexagrams.I think that sometimes we are presented with physical illness as an opportunity to grow spiritually. https://cafeausoul.com/oracles/iching

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  • Vaporvac Z6-OhioRiverValley

    eileen, I'm sorry to know you have gone through such hard times. I thought it was "only" your hip. As a caretaker of sorts, I'm really heartened by your comments and everyone else's. Pat, I love the inspirational reading.

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  • ingrid_vc so. CA zone 9

    Eileen, please forgive me for what now seem like rather thoughtless comments about cancer necessarily ending or shortening your life. My perceptions are no doubt colored by my mother's illness as she died less than a year after her diagnosis. I think what I really meant was that the specter of death and/or a shortened lifespan may be present with certain diseases like cancer. We all know that many people are permanently in remission or cured. Given what you've dealt with you're a true warrior.

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  • robw1963

    Unfortunately, I don't have any advice. Just wanted to say that I'm sorry you're suffering through this and I will send good thoughts your way. I used to work for an old editor (the type who actually wore the old green visor....yeah, a walking cliche) who said he was always thankful for the aches and pains of his life, because he always knew he was alive. He lived to be 96.

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  • bart_2015

    Thank you for your apology, ingrid. The remark did hurt me very, very much, but I know it was not made to do so, and this thread is not about me. My own mom died of lung cancer at only 52-today is, in fact, the anniversary of her death. This fact has made the whole thing even harder for me than it would've been anyway,but back then, in the 70's ,they couldn't do chemo for lungs, and things have changed a lot.

    One's psychological atitude is said to be SO essential when dealing with chronic illness,so I have to fight back hard.

    Perma,I thought of another thing that I did to help get through the initial phase: when praying, i thanked God specifically for the many blessings of my life, naming them one by one,as many as I could think of at a given moment. Always, first and foremost, my DS and DH. Then for the health that i did have, at least in the past, lol,and for the sun, the moon, the stars, the trees, rain, winter, spring, animals, insects, grass,my land, our house,etc, etc, etc. Saint Jude Thaddeus and Saint Rita of Cascia help me so much,and of course Saint Raphael the Archangel; he is called the

    "Medicine of God"

    @robw-I love it!!!

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