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Jesshblackburn

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Hi. I’m a 34 year old mom of 3. My doctor suspects fibromyalgia but we are waiting to see a rheumatologist before he makes a final diagnosis. I’ve been dealing with symptoms for two years now. Some days are bad some days are good. I wanted to ask a question muscle twitching is a new symptom for me it’s been going on for around two months now it was constant and all over my body at first and now it’s less. I have muscle weakness (shakiness) all over (no muscle failure or loss of strength) stiffness, and I ache all the way down my arms into my hands. All of that to actually ask my question. Is this something any of you have experienced? Thanks for the reply!
 

Nan

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Mar 6, 2022
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Hi and welcome. Good luck at the rheumatologist. Yes I suffer your symptoms and I always feel as though there’s worms inside my body wriggling about. It’s that sensation. I joined this forum just a few months ago and I have found it very helpful and friendly. Nan❤️
 

Looby69

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Hello 👋 @Jesshblackburn
I too suffer from the muscle twitching along with the tremors/shakiness. Like you, I experience muscle weakness but no loss of strength.
I have seen my GP, 2 neurologists and a rheumatologist. I've had an MRI of brain, neck and spine, I've had many bloods and also an EMG and none of my results have ever hinted at anything sinister.
My joints also crack more than ever, when I move around some days my joints click and crunch. I also experience jerks when resting and my reflexes are really brisk. And then of course there comes the pain and stiffness.
The twitching and tremors are the most concerning of my symptoms and cause me the most anxiety. However after all the testing by the professionals I have to trust that this is indeed Fibromyalgia.
I am otherwise fit and healthy and walk every day, at least 5k and a maximum of around 15k at the weekend. My energy levels are good and the fatigue is not as debilitating as when I first set out on the diagnosis route.
Since my symptoms started (Nov 20) I have been taking Levothyroxine 50mg for a borderline underactive thyroid, B12, HRT (for my menopause) and more recently Sertraline 50mg, to help with my anxiety and low mood.
The Sertraline has been a game changer for me and has really helped lift me from the depths of despair. I now have a healthy appetite, an interest in life again and am able to face what life with Fibromyalgia may throw at me. I still have my low days and exercise really helps me manage those days.
It's a tough gig this Fibromyalgia, especially given the many head scratching symptoms and lack of understanding by our loved ones. For me personally, this is why these forums are a really good resource, as you're connecting with other people that can understand and relate to many of the things you're experiencing.
 

fimi

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Hi @Jesshblackburn and welcome. I suffer with the symptoms you mention and can identify with with everything @Looby69 has said. I'm now taking pregabalin again along with my own self care plan mainly to help with pain and spasms. However, pregabalin was originally given to me for GAD before my diagnosis, and although it helped me personally with my anxiety as well as physical pain, I did suffer side effects that worried me, so kept away for a while trying other things. However, nothing else seemed to work as well, so are back on the pregab (now for anxiety and fibro) at a dose that works for me, which is a low 50mg twice a day and below the recommend dose. But my doc agrees if it works along with the self care to keep to it.
However, I still suffer side effects of more frequent twitches and shakiness, as well as a slight speech issue where I occasionally miss a word when speaking, I seem to slightly hiss instead - which is very strange. But I've decided I can live with these side effects if it helps with my pain and anxiety.

Mood issues have been a big issue for me, as I've suffered with waves of depression and ongoing anxiety most of my life. Now it's mainly anxiety, but I went to a very dark place a few years ago, and by accepting help thankfully got through it - I can honestly say I never want to go back there again, and do my best not to - It's hard enough living with fibro, but having anxiety/depression to deal with on top of that can be extremely tough.

Someone once said to me that I was lucky to have my family around me as a lot of people have no-one - and I agree, I was very much alone for the first part of my life, and I know how hard it can be having no-one to turn to. Now I have a family of my own, I'm so grateful and love them very much - but I still have times where I can be sitting in a roomful of people that try and understand, and feel the loneliest person in the world.
The reason I'm sharing all this is because Looby69's post struck a chord with me, and made me think of how, even in 2022, with ongoing coverage of mental health, we can still find it difficult to speak about on a day-to-day basis, I confess, I know I do.
That's why this site is so important - so we can share experiences and issues like this with people who will understand. I know it's helping me, and by sharing like this, hopefully we can help each other. So thank you Looby69 for sharing. :)
 

Jesshblackburn

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May 24, 2022
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Thank you all for your reply’s. It’s nice to know I’m not alone. I’m not on any prescription medication as of yet and the pain and weakness has been very hard to deal with lately. I used to have good days sometimes and not much pain but lately it’s been pretty constant. I’m going to Disney this week and am very nervous to go. Over the counter pain meds don’t help me much. Any advice on that? I’ve been having hip pain that goes into my thigh and to my ankle. I’ve already decided to wear a ankle brace because my ankle feels weak.
 

sunkacola

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2,305
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DX FIBRO
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00/0000
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US
Thank you all for your reply’s. It’s nice to know I’m not alone. I’m not on any prescription medication as of yet and the pain and weakness has been very hard to deal with lately. I used to have good days sometimes and not much pain but lately it’s been pretty constant. I’m going to Disney this week and am very nervous to go. Over the counter pain meds don’t help me much. Any advice on that? I’ve been having hip pain that goes into my thigh and to my ankle. I’ve already decided to wear a ankle brace because my ankle feels weak.
Hello and welcome. You are unlikely to find relief in over-the-counter pain medications. After all, if those would work we might not even have a forum because fibro would be easy to manage. Prescription drugs have a whole slew of other difficulties associated with them including bad side effects, addiction, and so on.

The best thing you can do for yourself is work out a treatment plan for yourself that is custom made just for you, and that can change as things change for you. The only way to do that is through experimentation, and you may take 6 months to a year to do all the experimenting you need to do, but it is so well worth it.

I have written a post all about this, and suggest that you read it. Please ask if you have any questions.
 

fimi

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Apr 12, 2022
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DX FIBRO
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UK
Hi Jess, that can be one of the annoying things about fibro; you never know how you're going to feel from one day to the next, so planning days out and holidays can be difficult. But please don't be nervous about your trip. One of the main ways to help with this, is to do things at your own pace, before, and while on your trip. Take your time and rest if you need to. I know this probably sounds obvious, but try not to burn yourself out by overdoing it - which I''ve done before and ruined the day! (I could get more excited than my kids on a day out!). And let people know how you're feeling.
Have a wonderful time at Disney Jess, and let us know how you get on.😁
 
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