It’s become my realization that I’ve been out of commission for the past 3 months or so, only doing the necessities to get by and the bare minimum while eagerly awaiting for this wretched flare to pass.
Since making the decision to stop taking Savella for my Fibromyalgia I’m in the process of learning to manage the pain and fatigue in a different way but it’s left me in a slump a majority of the time. My pain is sometimes absolutely unbearable and my energy level is constantly in the negative.
Is this how my life is going to be forever? If so, seriously, end it now. Is this just a flare? If so, how much longer is it going to last?
Some day’s are worse than others but overall every day has been really bad. If the pain is tolerable I don’t have an ounce of energy and honestly, every day I feel like I am constantly on the brink of collapsing, therefore maiking even the simplest things, like going upstairs to the bathroom, a big deal.
Despite not having the strength or energy to get things done I have at least made myself do one thing each day. Whether it is cleaning something, cooking a meal, or making it to an appointment on time. It makes me feel better at the end of the day knowing that I did more than just rest. And even though I haven’t done anything above and beyond the requirements of living I am feeling pretty okay with myself because of getting that one thing done. In previous months all I could focus on was what I wasn’t getting done and to think like that did a lot more harm than good.
I wish I could say that today I feel good and that I have energy to really give the house a good cleaning or to go to the market or cook a few meals. I wish I had the energy to give myself a manicure or that the thought of getting a manicure didn’t sound so painful, but still, again, today, I can’t say that. I don’t know if it’s the weather, stress, or the missing meds keeping me in this flare, but I’m beginning to believe that I need to accept this is how it’s going to be.
I should stop waiting for a good day to live life.
I know there are terrible consequences from pushing yourself too hard when you have fibro, or any other similar disease, but I have to wonder, am I pushing myself enough?
I do know that I can’t function like this forever, I’ll never get anything accomplished. I want to live and feel alive again. How can anyone live like this? How hard can you push yourself until it’s not worth it? There has to be a way to get more done.
If any of you have tips on how to accomplish more when your feeling awful, please, please, please share! Any tips or tricks you have about getting a flare into a calm state would be great too.
In the meantime, I’ll be brainstorming… From the couch.
Ginger Couturier 
Ginger, have you tried acupuncture? It is supposed to ramp up your bodies own chemical relief in response the pain and help you feel better. I can’t tell you if it works, but I’ve read it is supposed to give pretty quick results. It it were me I would try it, but then, I am not you…
xo, ~ Lynda
So funny, Lynda, on of my therapists just recommened an acupunctrist to me and I said I would try it. I have read a lot of good things about it as well. Thanks for the tip, it seems like a sign 🙂
I will be praying that it works a miracle on your pain! ~ Lynda
(Gah! That should have been body’s not bodies. oh well…)
Epsome salt baths help some when my flares are too bad. I put a cup of crystals in a bath of water, slightly hotter than is comfortable and soak for an hour or till it’s cold. then I shower with hot water (to warm up lol)I also have a heating blanket because cold makes me HURT.
I do soak in Epson salts sometimes and they do help a lot! I also try to stay in the hot showers as long as I can. I haven’t picked up a heating blanket yet, and I’m glad you reminded me of that tip, as I forgot. It’s great to meet you, thanks for your help 🙂
i’m not a doctor – just saying…
if only you could close your eyes and not think – it is almost impossible, because we have become so aware of our bodies, and those stressful thoughts that control practically every though…
my dentist, tugged on my mustache, while giving me a shot of novacane – i never noticed the shot, but previous to his technique – ouch!
can you escape by reading a novel, poetry, or listening to music – instrumentals rather than singing voices. looking up at the beautiful night sky, taking a walk in the fresh air, something active might naturally make you tired so you can sleep.
we certainly know how to focus on pain – alternate to prescriptions, would be focusing on something else, or learning to not focus – i like the latter, but preaching and doing are sometimes unbalanced…
never throw in the towel, we are all natural survivors – or try to be!
David in Maine USA
Thank you, David, for reminding me not to throw in a towl. My brain seems to never shut off. All I do is think and think! I feel very stuck in non-movement, which is something I’d rather be doing. I need energy! Music and movies are great at taking my mind off of the pain, maybe I aut to listen to some music and start doing tasks, probably it would make me feel more energetic? I hope so, I will let you know how it goes. Thanks for the tips and your kind words, they always make me smile 🙂
Ginger, why are you trying to get off meds? Other than the logic of not wanting to be dependent on a substance, is it really worth it? Are the side-effects so bad that it is worth it to live your life in pain?
I am not saying give up on a goal, but if it keeps you from the rest of your life, maybe consider bringing modern medicine back into it. Not to be a huge bummer, but I was in severe nerve pain for 7 years becuase of my back, and acupucture gave me litlte and momentary relief.
I have no point of reference for fibro, other than you, but I just think you are too amazing to suffer every day, when you could accomplish amazing things. In fact, you already have.
In love and sympathy.
Hi Beth, that is a great question actually. I decided the side effects were NOT worth taking the pills. They were making me suicidal and very very wacky. I was also bruising EVERYWHERE, which was another one of the red-flag side effects. My mind was completely out of wack and it was very, very scary.
It took months to wean off of them and when I was finally completely off I realized how little they were actually helping; in the begining they did help take the edge off conciderably and give me energy, but in the end after, I noticed that the pills only seemed to numb my skin. It feels great to “feel” my body again, even despite the pain.
To me, it wasn’t worth it at all and I truly want to deal with this without causing further unknown damage to my body.
I am iffy about the accupunture and massage therapies but I am really going to at least try. If either helps for a day or two then then I think it’s worth it.
Hi Ginger,I am a certified Naturopath and I would like to help. You can msg me on facebook and/or join my page:
http://www.facebook.com/pages/Healthy-Nutrition-Natural-Medicine-News/175402889165319
Yesterday I shared a question from a lady who was recently diagnosed with fibromyalgia and the responses and feedback she got are very positive and I would like you to read them all.
That was the question:
Care and Share Time. A follower asked:
” Hi, one month ago I was diagnosed with fibromyalgia. Is that for real? Will I feel that way all my life? Is that pain and fatigue, foggy head and exhaustion will be with me for ever? Please tell me no, because I don’t need such life! I am 38 years old mom who use to be active and now feeling useless and worthless. What should I do and where should I start from? And by the way, I have no power to do anything 😦 don’t want to live anymore. Help!”
And responses where the following:
” Willa Drechsler 1st i’d say change how you look and say…i know that many who have fybro. have reducesd sytomptons with change of diet and exercise..the dr.s say no cure…so well there is a life factor…i have had it for many years.research about it how you are is up to you…you want to be with your kids etc then you need to find out what you need to do
19 hours ago · Unlike · 5
Debora Burris McNicholas It gets better mentally and emotionally as time passes. I have had Fibro, Chronic Fatigue, Osteoarthritis and migraine since 2003, and still have an occassional day where I feel worthless, but I know better. The new me is just different and I had to learn how to do things a different way. The symptoms vary from day to day, and my mood sometimes isn’t the best, but I keep on plugging through because I refuse to quit. There are so many of us out there, join a support group, online groups can be great. It is hard to be predictable and show up for in person meetings. Keep your chin up and remember, you are still the beautiful person you once were, just different. Find something that makes you happy, makes you feel worth…a hobby. Then when bad days come you have something to take your mind off the bad stuff. I even escape into movies on bad days when I am in bed, and if not too fatigued a good book. Also talk to your doctor about depression, because it is a normal side effect/symptom to having Fibro. Your whole life changes and it is hard to cope. Cymbalta, Neurontin, and Xanaflex (muscle relaxer), really help. Also mild exercise such as Yoga and walking, or swimming helps too. I’ll keep you in my prayers; take care!
19 hours ago · Like · 2
Debora Burris McNicholas I agree with Willa, diet change helped me too. I steer away from anything processed, and sweets unless a special occassion or holiday. Lots of fresh fruit and veggies, lean meat such a chicken, fish & steamed vegetables are my fav! I cut back on pasta, eat rice and limit bread. I also take a probiotic which helps with digestion. Not sure it is a Fibro side effect, but my digestion and metabolism has slowed down big time. Initally I gained a lot of weight, but once I changed diet, got to a better place. I am happy being a 10-12, no big deal, and a lot squishier than I used to be (LOL), but that is okay too.
19 hours ago · Like · 1
Willa Drechsler http://www.facebook.com/DashingFibromyalgia …a good place to start a new part of your life
19 hours ago · Unlike · 2
Marta Carolina Saenz I had fibromyalgia. Immunocal gave me my life back . Look for it in the US.
19 hours ago · Like
Noémi Faludi Varga GAPS diet
19 hours ago · Like
Bryan Brown Watch FoodMatters! It’s on Netflix.
19 hours ago · Like
Healthy Nutrition & Natural Medicine News Depression might sneaks-in especially when newly diagnosed. Homeopathic remedies, herbal remedies and/or supplements work great in alleviating this symptom without overwhelming your system with antidepressants and other similar drugs.
19 hours ago · Like · 1
Stephanie Delatorre Everyone has given great advice! I’ve had it for 12yrs.now. Its manageable& under control most of the time.I do really suffer w/ the chronic pain&all of the things you mentioned.The flare ups knock me down a lot lately.Just educate yourself.There is hope.Diet& exercise do play a big role.Don’t over do the physical activity though.
19 hours ago · Unlike · 1
Debora Burris McNicholas Marta, was just reading about immunocal, it is a food source that acts medicinally. Very interesting…how long have you been using it?
19 hours ago · Like
Debora Burris McNicholas What homeopathic remedies and herbal remedies work for Fibro patients (to page owner)?
19 hours ago · Like
Monica T Oxendine exercise is a must to beat the pain. have an all natural diet…look into if your gluten, dairy, nighshade intolerant etc etc…..and rest when you need rest….ive had it many years and listen to your body!!!! I take no meds…tried that route but was far off worse than without
19 hours ago · Unlike · 1
Monica T Oxendine essential oils help also…and lot sof epsom salt baths
19 hours ago · Like
Healthy Nutrition & Natural Medicine News Debora, what I have mentioned is just a reply to what you wrote about treating depression with antidepressant, no need to these nasty medication if alternative harmless therapies are here.
19 hours ago · Like
Brooke Sandefur Paleo has reversed it. Chelation helps tol
19 hours ago · Like
Brooke Sandefur Too
19 hours ago · Like
Debora Burris McNicholas True…I have been wanting to get off meds for a while now, but cannot afford a Natropath. Actually cannot afford a doctor right now! LOL! If anyone has some advice on a herbal method, i have an herbal book and can look up whatever it is, price it, etc. Problem I have is, although Cymbalta has worked very well (neurontin is more for the migraine with the added benefit of acting like Lyrica, both are same type of drug), if I miss a day, I am miserable. I am thinking my body is dependent upon it! It is like a double edged sword, good and bad. I would love to take an herbal remedy in lieu of Cymbalta. 🙂
19 hours ago · Like
Debora Burris McNicholas Monica, I use Coconut oil, which seems to help with the pain a bit.
19 hours ago · Like · 1
Kathy N Tom Martin Fibromyalgia is tough. My sister has had it about 15 years. She has put it in remission by going alkaline….eating alkaline food, drinking alkaline water. (google it) or try watertoyourhealth.co
18 hours ago · Like · 1
Kathy N Tom Martin m!
18 hours ago · Like
Marta Carolina Saenz Debora: I have been on Immunocal for 5 years. Used to take 7 medications. Pain killers, antidepressants, you name it. They are all history. Thanks to God and Immunocal. All fibroymalgia patients should be on this product. Their life is going to change!
18 hours ago · Like
Melba Pierce You need to have your Vitamin B12 level checked – it should be closer to 1000 than 600 and you may be allergic to gluten – the protein in wheat, rye, barley and oats that are grown near gluten grains – otherwise, oats don’t contain gluten.
18 hours ago · Like
Susan Christine Mars St. Johns Wort (Hypericum perforatum) is helpful for taking the edge off depression. Diet (recommend plant based), exercise, and sunshine for FM. Massage (I used to practice it), especially trigger point release is EXTREMELY helpful too. Be sure you’re on a good multivitamin (plant cell/whole food complex, not synthetic). And while it’s easy for me to say (I don’t have FM, at least not that I’m aware), try to maintain a positive attitude. You’d be surprised at the difference that can make in one’s health. If we think of ourselves as sick, we become sicker. Love yourself, (fibromyalgia and all), take care of yourself, watch your beautiful children grow and be well. Believe it or not, there are many worse things out there. Blessings!
18 hours ago · Like · 1
Susan Christine Mars Oh, and definitely Acupuncture.
18 hours ago · Like
Brandie Nadiger-Harrop I have had fibro for years combined with fatigue syndrome. I have mine completely under control and it was easy. No sugar no white flour and limit or eliminate caffeine. Lots of leafy greens. I make sure to eat 10 servings of organic fruits and veggies every day and my 8 glasses of water. no smoking no drinking. I do yoga and lots of stretching and if I do have an attack cause no one can be good 100% of the time I swear by acupuncture and cupping
17 hours ago · Like
Veronica Garcia Negrete Find a list of foods that feed your brain and your mitochondria. I promise it will help.
13 hours ago · Like
April Panknin Fibromyalgia is considered by alternative healers, a delayed allergy as it states in the article below. I have read research studies stating that all fibromyalgia patients were allergic to either wheat, dairy or both. Proteins from milk and gluten (allergens) getting through into the bloodstream causes inflammation and pain. This is no surprise… these two items are causing most all other major health problems as well (along with processed sugar) And should be eliminated from every bodies diet if health is of importance. Get tested for DELAYED allergies, this is IgG and IgE, NOT IgA and completely eliminate what you are allergic to and your symptoms will go away and when your intestines are healed fully, you will not be in remission, you will be healed. Physically and probably mentally (because allergies cause depression and brain fog) If you can’t afford a test eliminate dairy, wheat, soy and nightshade plants. There is no such thing as remission, if you don’t fully address what is causing the problem in the first place, then you still have the same problem reoccur. I would suggest a 2 week green smoothie/juice fast detox minimum, eliminating nightshade plants as well and after detox symptoms subside, you should feel great! Also aloe vera (fresh or high quality supplement) and ghee/clarified butter (no lactose or casein is in this) is great for healing the intestines. Good luck to all and remember, God gave us food to nourish our bodies… it’s our responsibility to educated our selves (in this deceptive world of advertising) on what does actually nourish and fight the enemy, who attacks us using (processed) food. We all must fight this battle! http://www.nutramed.com/fibromyalgia/fmallergy.htm
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3 hours ago · Like ·
April Panknin I read those studies a long time ago, but may try to find them if someone lets me know they are interested in checking them out.
3 hours ago · Like
April Panknin This video talks about why fm develops, much more detailed then my explanation. This Dr says you CAN be pain free!! Its only 3 minutes!!———http://tv.naturalnews.com/v.asp?v=A12657CB30A1F7F6B34F0C667784CDBC
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3 hours ago · Like ·
April Panknin Even more important FOR ALL!! GMOs linked to all intestinal permeability problems=autoimmune. GMO fed animals have intestines so thin, we can’t make sausage with them and must import them!! This thinning allows proteins from foods, common allergens… to get into your blood. Watch this video and I hope you will stop eating/buying GMO’s! http://www.youtube.com/watch?v=HVeS1yIA7x0
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2 hours ago · Like ·
April Panknin This is specifically about GMOs and autoimmune and intestinal disorders! http://www.fridayharborholistichealth.com/2011/03/gmos-cause-gluten-allergies-and-celiac-anxiety-auto-immune-and-neurological-diseases/
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2 hours ago · Like ·
Kai A Watkins Someone very close to me has fibro & osteo arthritis. At 32 she was walking with a cane and on 11 meds. She has learned about gluten-free, avoiding processed foods, avoiding dairy, soy, GMO’s and mostly eating organic. Now she takes no meds and has ditched the cane. Learn about Leaky Gut Syndrome, detoxifying, Chakra healing, massage therapy, exercise and meditation as well as aromatherapy.
I hope this helps. Any further information I am ready!
It’s funny that I stumbled upon your blog today as I have been seriously considering weening myself off Savella for the last month. Just like you I saw a huge improvement in the beginning, but now I feel as if I have lost myself because of it. It was nice to read that I’m not the only one who experienced the weird side effects. I still have a fair amount of pain with the Savella and I’m starting to think I am better off finding more natural ways to battle with the Fibro so that I can at least feel human again. Thank you for sharing your story!
It’s great to meet you and I am sorry that you are going through a similar experience with the Savella. It became downright scary and almost out of control for me. I was very lucky to have a friend that I could call, who knew what was going on and would rush to my side when things were very bad. It is hard to talk about those types of things with people, but if you are experiencing thoughts of self harm, please have someone you can call immediatly and don’t take it lightly because my urges grew very strong before even recognized the problem.
If you do decide to stop the Savella, wean yourself off VERY slowly. It took me about 10 weeks to get off of it fully. I was on 200mg a day and cut the doses in very slowly and gave myself 2 weeks on each lower dose. DO NOT STOP ALL AT ONCE. I still experienced withdraw symptoms for about 3 weeks after weaning off as slowly as I did. The withdraw wasn’t too bad but I did feel “electric shocks or jolts” during that time. It really makes you wonder.
The best thing to do is talk to your doctor, and be prepared to stand firm as they might discourage you stopping the meds.
It is a very personal choice and you will ultimately need to make that desicion on your own, but as I said above, I personally did not notice an increase in pain once I stopped. I felt very different and more myself again. Good luck with whatever decisions you make and if you ever need to chat, I am here or you can email me at bratcakess@gmail.com or on twitter/facebook (links above).
That’s very sweet of you. Thanks for the advice. Like you, I am very lucky to have someone to turn to that has been holding my hand through this whole process. My dosage isn’t as high as yours but we think it is best if I still ween myself off of it. It’s good to know what to expect. Thanks again for sharing!
Oh Ginger, hope all will be better soon!