Hi everyone

Hi everyone

I am a 40 year old female and have been living with RA and Fibromyalgia for the past 8 years. I am firm believer that there is always someone who needs to hear your story. Living with chronic illness in my case I would say chronic panic. Has been very difficult. Those around you try to understand but it's not really possible unless you been there yourself. Sometimes all we need is a listening ear...others just to be left alone...we are not always easy people 😜

I am thankful to still be able to have a full time job. I work as a private nurse and some days I wonder if I would make it out of bed...fear and discouragement can rise up and as many of you may know if we stay for long in that place it can be just as crippling as the disease itself! My faith has been my anchor. My hubby has been my strenght and my children the "push" that I need to keep on fighting. Anyway, I am always looking for new ways to fight this fatigue, inflammation and pain. Therefore I look forward from those of you that have any great tips!:))

Blessings 💕

Vivi12

19 Replies

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  • Have you tried Vodka??....lol..just kidding. I just take it one day at a time. I am thankful that I have a loving understanding husband. I have been on sick leave for almost 6 months from work. I am still trying to find the right "cocktail" of meds to control this awful disease. I think my new rheumy and I are almost in clinical remission and I couldn't be more happier. I am looking forewards to going back to work in the new year. It might only be part time, but at least I will feel more like my old self.

    Welcome to the site.

    take care

    Sue

  • I may need to try that😁

    Yes, my "right cocktail" has not been discovered as of now. It's funny how doctors always tell us about how wonderfully drugs work. Then you speak to those taking them and you hear different stories.

    I am glad to hear you are well enough to get back to work!! I hope your doctor finds your "miracle cocktail" soon. I know it's possible...sometimes it just takes a bit of waiting :)

    Blessings,

    Vivi

  • You can always try something along side of your meds like anti-inflammatoty diet or LDN that has really helped many with FM pain. Take care:)

  • I need to research LDN. This is the first time I hear about it. What kind of diet do you follow?

  • Hi Vivi12,

    I follow the AIP diet, lots of info on the net. If you want to learn more about LDN, ldnresearchtrust.org is a good place, good luck:)

  • Thank you I talked to my Rheumatologist and she will research the LDN and get back with me.

  • Many AI patients that are on LDN have educated their doctors on the med. LDN Research Trust have material you can give your doc with the information a doctor should have. Good luck and let us hear what your doctor said. 😊

  • She has me back on Savella. It's the one medication that has worked for me but I started having much nausea with it and I had to stop it about a year ago. We are giving it one more try and hopefully it will work. So far so good except for all the nightmares I am having 😳 And the anger that can be stirred so easily...don't you love all the side effects?!?! Yuck!! But I am hopeful that they will stop soon.

    According to my specialist if this medication doesn't work she will consider prescribing the LDN. I'll let you know.

    Thanks for your great tips. I am slowly changing my diet. I've made some good changes already but after Christmas and I am going to step it up. 😁

  • For relaxation try adult colouring in,i use glitter pens as they are thicker than pencils.xxxxx

  • Thanks Sylvi I need to try that😁

  • Hi Vivi12.. Welcome to the group. I am curious how they can tell fibro from RA. The pain levels on both are significant...

    I wish I had some useful tips on the fatigue and pain, but not so much unfortunately. I am struggling with all of that too.

    Mostly we just take everything "one day at a time" and try not to project too far into the future, but still try to know that it WILL usually get better - it just might take a while...

  • It can be tricky but when my RA flares up I get fever/chills and localized pain. The fibromyalgia pain is different in the sense that it's everywhere. One usually flares up the other.

  • That's no fun at all.. Here's hoping you feel better soon!

  • Rest is the only thing for fibro sadly. I know my finger pain is caused by the ra and the pain in my shoulder is caused by fibro,the pain in my back is caused by compressed discs. It is hard as whatever we do we pay for it. I do adult colouring in with glitter pens which are thicker that crayons.xxxxx

  • Vivi12, my heart goes out to you with both both RA and Fibromyalgia, it is good to hear your faith is your anchor. My prayers and thought for you today.

    Esther

  • Thank you Esther💕

  • Hi vivi, i fnd baths with Epsom salts very helpful with pain. I also use magnesium spray oil when bathing not suitable. Also arnica cream from boots. Heat of any description, lap mats, microwave wheat bags, hot water bottles etc. Essential oils etc. All the best

  • Thank you for all these great tips. Sorry it took me a while to respond. I am swamped with school work right now. 😁

  • Essential oils are great, also a balanced anti inflammatory supplements that have whole foods. from what I have read that no matter what one does that they will always be on some level of medication. Finding the right mix seems to be the key. My son was just diagnosed in Dec 2016, doing a wheat free, starch free and taking the Vit and , turmeric, waiting to see the Rheum, Terrified of the side effects some of these drugs may cause, but sounds like for most people they vary. he is also taking probiotics with a prebiotic , which help with bacteria in system as with AS you have low immune. With the essential oils I do a series of ant inflammatory oils down his spine and massage clockwise into the spine. he seems to have his best days after this treatment. His Dr is going to do blood work in a couple of Weeks is open to all he is doing. Swimming and the hot tub helps and exercise. So the drugs I am reading control the pain and progression, I am assuming without them the damage will continue faster. So the key is to keep down the inflammation. And as many have said, you can feel great and then hurt all over the next day. My heart goes out to all of you and my son he is 27 young like alot of you I will refer him to this site as it is some what of a comfort to know there are many of you out there the in the same position.

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