Just been diagnosed: Hi everyone, I’ve... - Fibromyalgia Acti...

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Just been diagnosed

Nannainpain profile image
14 Replies

Hi everyone, I’ve been suffering for years with pains in my stomach. Had a hysterectomy at 36 then at 50 had my gallbladder removed since then the pain has increased & now in my back dreadfully. Struggling with pins & needles in my arms & hands & shaky legs. Put on PREGABALIN which initially helped, I don’t sleep well due to the pain so that doesn’t help either!

Finding things really tough at the moment especially as I lost my Husband last May to cancer. Everybody thinks I’m doing really well but I’m broken underneath it all. The situation of lockdown hasn’t helped any of it either. I try to be positive each day & when I feel good I get out & about if I can. Today is not a good day & I was up half the night with pain. I would welcome any suggestions from sufferers as this is all new to me. Although I’ve suffered with pain of all sorts for so many years & everything was always put down to IBS. It would be good to hear from anyone in similar circumstances.

Thanks

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Nannainpain profile image
Nannainpain
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14 Replies
Dizzytwo profile image
Dizzytwo

Hello, it's nice to meet you and wish you a very warm welcome to the group😊

I am sorry It sounds like you have been having a very rough time of things thats for sure. I'm glad you found us. Take your time and check out some of the very helpful posts that our friendly members have been happy to share with us.

You may find a lot of great information at our main forum if you would like to take a peek this is the link

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I see you've left your post unlocked to this community only for privacy reasons you may wish to lock it 😊 its not a forum rule but I alwats advise it and like to let members know they do have the option to do so. Just follow the link below. If you need further help please just ask xx

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Momo

Yassytina profile image
YassytinaFMA UK Volunteer

Hello and welcome, sorry to read of your loss, you sound like you are putting on a brave face for everyone , being in pain is horrid and lack of sleep can be very wearing on top, i do find soaking in the bath with some radox does ease my muscles , lower back and shoulder blades are two of my most aching areas , I also use a rub in gel called bio freeze during the day, Boots/Amazon sell that, (always run this by your pharmacist if taking medication.)Heat differently makes a difference , do you hurt more in Winter?, yes getting out does help our moods , can’t wait till I can sit outside, differently the Covid situation has added to our woes. I had my gall bladder out in my 40s along with a massive gallstone. I hope to see you posting again on the forum , some lovely people here xx

Nannainpain profile image
Nannainpain in reply toYassytina

HiThank you for replying to my post.

So nice to think I’m not alone with this!

This winter has been particularly bad but I think it’s associated with everything I’m going through anyway. Can’t wait for the spring and restrictions to be lifted to feel ‘normal’ again, I’m sure that will help?!

Looking at people’s posts it appears a lot of have suffered with similar things before they finally get the diagnosis, if you can call it that??

susanjones2659 profile image
susanjones2659 in reply toNannainpain

Hi. Sorry to hear you are suffering. I to have had bad stomach pain and was hospitalised back in October. I had so many tests to get to the bottom of it. Nothing showed up and I felt like a fraud. I find that eating smaller meals helps. I also take vitamin D supplements which has help ease my pain enormously. I hope this helps

Nannainpain profile image
Nannainpain in reply tosusanjones2659

HiIt seems the norm for people to suffer for a period of time before it’s decided you have this! If they can’t diagnose it how do they know you’ve got it?

Have you had tests for

Arthritis or rheumatoid arthritis? I haven’t & am just wondering what tests people have had to determine what is wrong with you?

It probably will be one of these things that a lot of people suffer with without actually finding the root of the problem so the Dr is guessing it’s this?

susanjones2659 profile image
susanjones2659 in reply toNannainpain

I do have some arthritis but not in all the places where I get pain. I broke my shoulder about 6 years ago and it seems to if all started after that. They do say that an injury can start you on the path to fibramyalgia. A year ago I had another fracture and had a 4 month long flare up of pain. I started on Vitamin D and that helped quite a lot. My pain can move around quickly or stay put for days. I do have osteoporosis in my spine.

Blun01 profile image
Blun01

Hi, yes you are not alone. We all feel your pain, worst thing is no one can see it so like you say everyone thinks ya just fine when deep down your not. I’m sorry to hear that you lost your husband, sending you hugs.I think mine started many years ago, I always had stomach pains and body pain and ended up in hospital for tests but nothing ever found. I always left feeling depressed as I knew there was something wrong. Then I had trouble conceiving, ended up having 2 ectopic pregnancies in which I had to have both Fallopian tubes removed as they’d ruptured. Then I had gall bladder removed, then diagnosed with iBS. I’ve only recently been diagnosed with fibromyalgia which I had been saying to my docs for a long time. In amongst all this my dad passed away. It’s made me become a strong person and I try to stay positive throughout.

I’m 50 in July so happy days x

Jade0076 profile image
Jade0076

hi I have is and fibro and have same prob but my go does not accept Fibonacci as a real symptom

Blun01 profile image
Blun01 in reply toJade0076

Hey

My doc didn’t either, after years of me being poorly, each time I rang them it was like I was an inconvenience.

So, I changed docs and they were straight on the case. Maybe worth thinking about doing the same.

Good luck.

Bruton profile image
Bruton

Your story sounds similar to mine. Managing stress is a big key. Have you trien having a bath with epsom salts. The magnesium helps the pain. Turmeric tablets can help.. weighted blankets realky seem to help allot of sufferers. If my seratonin levels are low i really suffer. Aromatherapy oils like lavender can help with relaxation. Good luck Good luck.

Nannainpain profile image
Nannainpain in reply toBruton

HiNo I haven’t tried anything yet other than being prescribed the PREGABALIN tablets. I will try the Epsom salts to see if that helps, thanks. When I think about it I can say that I noticed the pains more as soon as my husband was diagnosed with cancer so yes probably stress is a key factor for me!

Did you actually have any tests or anything to confirm this diagnosis? I can’t understand how they can diagnose it on symptoms alone?

Bruton profile image
Bruton in reply toNannainpain

Diagnosing isvdifficult apsrently. Highly likely is as good asbit gets during lockdown. Ask if i need help. My letter ticked so many boxes. But none of it an emergencu ,o thats where things are at the moment

Jade0076 profile image
Jade0076

hi thanks for reply i have just joined this site its good to hear that i am not alone my gp have been very cold i to am thinking of going to another but feel doc take on to many new people its all about pushing drugs and money no time for you some times all you need is empathy and kind words

Bruton profile image
Bruton

Sleep and stress are massive factors. Ive had trauma on and off most my life. Now we've moved away. New county, new start. New way of life. The trauma issues resolved or the givers no longer in my life. For the 1st time im not stressed. Im sleeping. Wouldnt say pain free but the least amount of pain since i can remember. I put myself 1st and try not to let things get to me because i know ill be ill. If i feel good i go on walks with hubby and dogs. If i dont i wont. Walked 5 miles last sunday!! Probably a bit 2 far. Shattered for several days after. Take each day as it comes. Laying in the conservatory in the sun, listening to the birds here in new forest.. im happy and content and cant believe the change in my health and well being. Feel truly privalaged for this chance at last. My old gp said my life story would be considered 2 far fetched for script writers. Convinced stress is a huge factor. Good luck.xxx

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