6 Things You Should Say to Someone With Fibromyalgia

“Thinking about you!”

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This can either be said verbally or via a text message, email or Facebook message. It’s short and simple and lets the person know that you’re thinking about them and are in their corner without probing them for information.

Gene expression pattern found in study associated with fibromyalgia, chronic fatigue syndrome and depression.

10 comments

    • Aubs says:

      I completely understand, as someone who has been diagnosed with Fibromyalgia for almost 5 years…I think, but took years to diagnose. I am pretty sure that I have had it since my mid 20’s. I am still paying doctor bills for all the testing to come back negative. Except when I was diagnosed last summer with Graves Disease/hyperthyroidism,as well. When I met my husband I was doing great! I was working full time, taking care of the household and felt it was great that everything was 50/50. He helped with cooking and we took turns grocery shopping. However, when I was diagnosed he didn’t have a clue what I was going through. He’d yell if I forgot something, pissed when I got fired from jobs that had me working full time and expected me to be the same person he married. He thought if I wasn’t working than the house work, cooking, etc should be all my doing. Needless to say he grew up with 4 brothers and a tough as hell mother. He just naturally felt I look fine, therefore it must be in my head. We were on the verge of divorce, but I was too afraid to do ALL of it on my own. Almost 1 year ago he got 2 hernias and 2 surgeries back to back. It was a miracle when I started working my new full time job, the very first day he was home recovering. With his attitude, that nothing, not even “Cancer” would stop him from working…(which was hurtful physically and emotionally-made my flare ups worse)…this FINALLY humbled him a bit. I treated him like I wanted to be treated. I asked all the time, “Can I help you with that”? When I was too tired after a long day, I’d ask, “what can I do to help “? He actually said, “If you feel even half the pain, I do now, but constantly…I am so sorry “. All of a sudden he got better and all the extra work I had done put me back into many flare ups. I’m still working the same job, barley and only because I wasn’t lying when I said I could do the sales job FT, at that time. Now, my husband thinks I can do it all, 50/50 again. Today is my turn to go grocery shopping and my arms, neck and legs are hurting so bad from sweeping the house. He knows I am having a bad week and not feeling good, but has not once asked me if he can help me with anything. I’ve tried talking to him for the last month and told him I need more help. I’ve had to remind him of his surgery because unlike fibro, he got to forget about that pain and he’s getting better at not expecting too much. But, jeez it would be music to my ears if he would just ask, “Would you like me to do the shopping this time “? Or, I will sweep more often. He works 50-60 hours a week, but works out 3-4 times a week and still feels he does “enough”. Am I expecting too much? Or should I still try to teach him that I need extra help. Oh, and we have no kids other than my 13 year old step daughter we have part time. Feeling better he’s getting it…but the stress and patience it’s taken to get him this far has had me crippled in pain and doubts. Anyone else having trouble with their partner understanding or suggestions on how I can get him to offer the help more on his own and without me asking? It has to be his idea, for it to work. Lol!

  1. Jo-Anne Wiszniewski says:

    I would rather be able to do things more for myself, by myself, having a better quality of life, not losing my indepence, which is something I take pride in, love being independent, love to be drug free, I’m a survivor, I won’t allow fibromyalgia to run my life, I’ll find a way to beat it, everyday is a brand new day, different symptoms, different way how to live with it, what was I saying … Live each day as a new one, not as just another day, my list of what I did today was less than a couple of days ago, but more than yesterday, I was house ridden, highly fatigued only over 1hour sleep over 50hours, but last night not knowing on the couch which doing puzzles slept for about 3 hours left me highly dehydrated massive headache drank heaps of fluids 2 hours later awake, sleeping in my bed for the first time in days for 3 hours till 6am had drink water drifted off to sleep having 2 and half hours sleep (wow first time in ages overnight 8 1/2hrs sleep not straight never had), left me highly drained highly fatigued in pain from head thru to feet massive headache sore throat flu like symptoms sinusitis sore ears especially right highly dehydrated drained overly tired doesn’t feel like I’ve had any sleep at all. Not use to having so much sleep. Usually surviving on much less. After had shower, took my 2×Osteo Panadol 2×Panadeine Forte 15ml chesty cough liquid 2×Xergic180 tabs just so I could do my washing by hand as my washing machine doesn’t work, can’t take anymore as can’t swallow so 1×vitD3 1000 2×CoQ10 150mg 2×Glucosamine 750mg & chondroitin 250mg (ran out if 3×flaxseed oil gels). After pushing myself finishing washing, just managed nearly dry reeking taking another 2×panadeine forte as I’m in total agony, took washing off line, stabbing pains pinched nerve constantly for hours in different parts in my back, my feet are changing from numbness to stabbing to having my feet in front of a heater on fire, they’ve swelled, uncomfortability sitting standing up, pain in arms shoulders my clothes are heavy against my skin, my skin is so itchy plus my Norspan Patches are so itchy as I’ve allergy to the glue in my patches (that help with pain otherwise I cannot do anything), gets so itchy I scratch them off with my arms chest looking like a patchwork quilt red raw bloodied have to move my patches sticking it back down with elastoplasy which too I have an allegy to. After 8pm really tired, pain level is so high, now probably won’t be able to have any rest nap sleep, as this always happens, staying awake for 24 36 48hrs then nodding off don’t call it sleep napping nodding 20 30 45mins then another 24hrs without that much nod at all. This week I’ve only ‘slept’ for maybe 15hrs more or less considering there’s 24hrs in a days and 168hrs in a week, so I’m very sleep deprived and family friends wonder how I managing survive on this day in day out year by year. Still I will keep on with another day and tomorrow do part 2 of my washing hopefully see how things go. As tomorrow is a brand new day another day whether I fall of to sleep or not. Survival .. living each day as it comes, is the key to Fibromyalgia.

  2. Jo-Anne Wiszniewski says:

    I’ve tried everything from methadone to lyrica, either doesn’t work or with really bad side effects from numbness turning black from head to toe nauseated passing out diarrhea etc. The only medication that has in part worked are my Norspan Patches 30mcg Panadeine Forte tabs Osteo Panadol Vit12 injections every 3 months. That’s it!! NO OTHER MEDICATION treats my fibromyalgia at all!!

    • Elaine says:

      I know for a fact by my experience that the only real long term relief is Medical Marijuana! I lived in Maine for 54 yrs, moved to Sierra Vista, Arizona July 2013 due to Fibro and OA. Elevation and climate do make a huge beneficial difference, can’t even visit Maine unless it’s September early October. Dr. recommended MMJ when I moved here. Long story short, 3 months of research via trying different strains and logging results, I made my own Cannabutter. I don’t get high or impaired, I get total relief! 9-16-16 was last time I used edibles as new NP said I couldn’t use while on pain meds (butchered by back surgeon, Tucson Ortho is going to re do). On 10-12-16 worst 10 Fibro flare I’ve ever had. It’s cruel that anyone suffers when there is natural med that does work! Didn’t know how much MMJ really saved me till it was taken away.. Finally found real Dr. who understands, no appt till 2-6-17. New NP strict drug tests. After each one month appt. I use edibles for 2 weeks of relief. Even if I do smoke a very small amount, I get relief for 2 days. Have to suffer for 10 days while I detox my body so I can past test. Says she’s bound by DEA, NOT true! No more of her games as of Feb. 2017. We have Cannabinoids in our brain. God and His natural medicine along with essential oils have saved me! DEA is not doing research which is hurting/affecting millions of people who suffer. MMJ works on every single health issue!

      • Patrice says:

        Does MMJ work for sleep and fatigue as well as the pain(all associated with fibromyalgia?)
        Is there anything available medically in Canada yet?
        My concern though is what does MMJ do to the brain in the long term?

        I would appreciate a response if possible.

        Thank you so much

  3. Barbara McKenzie says:

    I don’t feel so alone now. My GP is of the old school…she graduated in England in 1968.. I’ve had her as my GP SINCE 1981. I feel like I am always battling with her. All my different ailments…make sense after reading your replies. She makes me feel like a hypochondriac. See, I have sleep problems too…but I can’t stand it..so I take sedatives. I’ve been seeing a psychiatrist for years now. Still, my gp is blaming all my spasms on “BEING OUT OF SHAPE” as she puts it. I had a series of falls. I do agree with her..that I’ve been over medicated ..she blames everything on my Fentanyl patch. The extreme sweating. I am post menopausal. I know of people who have told me they get the same symptoms, but, I did look up online side effects of Narcotics…and it does cause sweating. My GP …she wants me off the Fentanyl. What she doesn’t realize it gives me some quality of life. I want so bad for people to take me seriously and not blame it on my mood disorder! I’ve been working hard for years to learn coping skills and get the mood swings under control. I feel I have. My friend has noticed significant difference. I crushed my T12 vertebrae bone the last Week of May 2016 after a fall in the bathroom. I went to the ER by ambulance in severe pain. The idiot of a Resident Doctor sent me home…gave me the same strength of pain medication I was already on. He didn’t even do an x-ray. Despite my injury I went about my usual activites…because I let my stupid neighbour guilt me into believing I was faking my pain! 4 days later I went to a walk in clinic and asked for an Xray they never got back to me, about the 7 day mark I passed out again in the bathroom.. down again I went. Back to ER by ambulance. This time I talked to my best friend in tears…they were treating me the same way…I couldn’t believe it. She told me to demand an xray..so I did..I said you cannot send me home this way. WOW did things move then..they found the crushed bone in my back. They admitted me. DID NOT HELP WITH THE PAIN..IT WAS HORRIBLE…they kept saying we can’t give you more meds…because of your risk fall. I went from the Family medicine ward…to another campus..to short term rehabilitation for 2 weeks. I’ve been in severe pain since. I had a follow up x-ray (at my strong request)in September 2016. My GP didn’t even have the courtesy to follow up with me. I got a copy of it from her secretary in November and found out It had gotten worse. See, I have DDD (Degenerative Disc Disease) and I also as a result of this crush injury have…Osteoporosis despite having a “NORMAL” Bone density test result in February 2016 of this year (AS PER MY GP). I find the only way I can cope with the severe part of my pain is to lay down in bed on my right side. As a result. I find the severe pain in my upper spine is easing up….must stop typing too much pain…god bless all of you.

  4. Opal Cornelson says:

    I’m so sorry there are so many of us who suffer from the disabling effects of the atrocious disease termed Fibro myalgia.
    Head up. We’re together in this outcry for medical justice!

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