Will symptoms of fibromyalgia get wor... - Fibromyalgia Acti...

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Will symptoms of fibromyalgia get worse over time.?

Adaking profile image
9 Replies

After 7 years in pain, today I was diagnosed with fibromyalgia. I feel tired most of the days. I feel bad as I have 3 young children and there are days when I'm very exhausted and I feel like I cannot give them the the attention they need. Daytime I cannot rest as feel more pain all over my body and sometimes I feel like my skin is burning. I'm hoping that it will not get worse.

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Adaking profile image
Adaking
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9 Replies
Fra22-57 profile image
Fra22-57

Sorry to hear how you are feeling.It must be doubly hard with trying to cope and amuse young children when all you want to do is feel like collapsing in a heap.some people have it worse than others and are very disabled .mine was first of all diagnosed with nerve pain and given a drug like pregabalin. I later got diagnosed and was put on steroids.I have acquired other auto immune diseases after it so am on alot of meds but I can say no day is the same.some days I feel so ill I cant function.I am like you and just cannot sleep as struggle to get settled then am always waking up in pain and yes heat attacks me and feel like I will pass out.

I have learned alot on this forum and realised lots of my symptoms are this cruel disease which healthy people dont understand.

Have you tried amitriptyline for sleep.its supposed to help but didn't me and it may not be something to take with having small children who need your attention if they wake early.Does your doctor help you with anything

Adaking profile image
Adaking in reply to Fra22-57

Hi Fra22-57,thanks for your reply. Currently I'm on gabapentin and yes I have tried amitriptyline but I did not help contrary I felt worse tired not being able to concentrate literary I was like a zombie. I had to stop because I couldn't finish my studies. I was diagnosed only yesterday and I did not see my doctor yet. However, I noticed that a good night sleep, planty of fruit and vegies help alongside with an active lifestyle.

Unfortunately other people including my husband cannot understand how I feel, he sais I make it up. my marriage is deterioration and I want to know if I will be able to look after my children on my own.

Many thanks again, it's lovely to share my experience my someone who can really understand me.

dogee profile image
dogee in reply to Adaking

sSO SORRY to hear U R NOT Feeling well. I found heat worksbest for me! Also topical 'pain away rubs & sprays...they give me relief in 2-5 minutes which last several hrs. I can only sleep 2-3 hrs. must change position &/or use bathroom {incontence] i TAUGHT science grades 7-12 for 48 yrs. in Wash. DC 12 & MD 36...loved my work & the students!

Really could do without all this other stuff [smile]...I pray a lot HE answers & gives me rest

& great ideas when I dream...I try things...they work so I'm OK doing them when awake!

I'll keep U in prayer...stay safe...keep in touch!

Adaking profile image
Adaking in reply to dogee

Hi Dogee, thanks for your reply. I tried to use pain rub with menthol (recommended by pharmacist) and made my symptoms worse. I will still try to see if there is any withouth menthol. I guess stress contributed to my pain as well, working (in research) , studying ( MSc) and homeschooling my kids (due to covid-19). Hopefully I will be less stressed now that I nearly finished my studies and there is no homeschooling. Its funny that warm weather ameliorate my pain, maybe I should move to a hotter country.

Many thanks again and take care.

Midori profile image
Midori

Hi,

Personally I feel that Fibro is different for everybody. I can track my symptoms back to the late 70s, although I was not diagnosed until around 2006, when it was suddenly stepped up a few gears by a set of incidents and illnesses.

I have been through the pain, the flareups, the depression, the gut problems and all the rest, and I have come out the other side relatively unscathed. OK, It's not back to pre-diagnosis, but I am off all the meds at present, and although I walk with sticks or a rollator, I don't feel too bad, considering I'm 72! I do have a wheelchair, which sulks in the garage, but I'm not using it any time soon.

The Fibro hasn't gone, but I have learned it's tricksy ways, and have managed to find work-arounds, The trick of eating the Elephant, (in small portions!) and splitting my work into bite sized loads. Fatigue and stiffness are the two things which are my main problems, along with a gluten senstivity, and stress kicks off a flare for me.

Sure, I'm not getting back on a horse any time soon, or rockclimbing, ballroom dancing, or long distance walking, as I used to do, but I can still pet horses, talk about climbing, watch Strictly and beach about the judges' decisions!

Lockdown has been both a blessing and a curse, I moved away from the town where I had lived for nearly 35 years to a disabled friendly bungalow nearly 300 miles away, in February, but having to refurnish from scratch using only online sources has been a challenge, to say the least, (none of my old furniture would fit!) Trying to find ingenious ways to store stuff has also been interesting, (I thank providence for Storage beds, sofas, ottomans, etc!)

The kitchen is a particular challenge; its only about a third of the size of my old one, and with very little cupboard space. Currently I'm using a bookcase as a larder!

Cheers, Midori

Chrisbel profile image
Chrisbel

I have found that certain food groups can make pain worse, such as sugar, caffein, dairy , wheat, chemicals in foods, chemicals in general, house cleaning products, shampoo, anything you put on your skin basically, I found that when I changed my diet and got rid of most chemicals, my pain lessened, it's different for each person I think so it's necessary to experiment, also supplements and physio and mild exercise help, magnesium malate and vitamin d3, omega 3 oil and curcumin are helpful, breathing oxygen helped with the fatigue and brain fog. There are many more ways I have found to deal with the symtoms naturally and there are plenty of articles written by researchers on line if you want to seek them out, ways of reducing the fibroids in the muscles, etc.

Adaking profile image
Adaking

Thank you all, you are very supportive. Based on your suggestion I think I will keep a diary to keep a record of what I eat and do to be ble to see what works.

ShelWhitt profile image
ShelWhitt

My best friends are my hot water bottle or an ice pack!

Adaking profile image
Adaking

I use hot water bottle as my feet and wrists are always cold, rather have a feeling of frost bite. I wear t-shirt only when is wery warm outside and is not windy. When I'm walking I feel absolutely normal but when I sit down to rest or to sleep then the cold and pain is coming back.

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