Some advice needed please : Hello... - Fibromyalgia Acti...

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Some advice needed please

Claire91 profile image
14 Replies

Hello everyone

I'm very very new to this I just need some help really and some advice

For the past couple of months I've been feeling like crap to be totally honest with you all..I'll have my good months and my bad months.but the last month or so I've notice that I have lower back pain most of the time and my neck is stiff to turn and I also noticed that my fingers go stiff and their sore to bend sometimes if you understand what I mean.i constantly ache and I constantly feel shaky and weak and also my toes have began hurting me now I was out shopping and the pain from my back had gone down to my hip and thighs! I've also had pain under my ribs well it feels like under I don't know I've had a few blood test and everything has came back clear.. I honestly hate feeling this I really I don't know what to do would someone please kindly give me some advice

Thank you

P.s so sorry for it being long

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Claire91 profile image
Claire91
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14 Replies

Claire hello nice to meet you Fibromygia means pian all over When I was told I had it , the Docter at that time it would get worse and it has , It started in my right foot big toe now it all over my body , so all you can do is combat it as best you can as we all do on this foram xx

Claire91 profile image
Claire91 in reply to

What were your symptoms if you don't mind me asking? X

in reply to Claire91

Started off in one big toe like nummiing pain then over 10 years spread al over my body At first the hospital siad I had restless legs Then after 4 years they told me I have Fibromygia

Now I have pain all over but I stilltryto live a life you have too xx

Claire91 profile image
Claire91

Hello

Thank you so much for your post

My doctor hasn't diagnosed with fibromyalgia..

I just wanted to know if everyone had the same sort of symptoms as me?

Even now bending my toes hurt does that sound silly to you

Hartleyhare2 profile image
Hartleyhare2 in reply to Claire91

No it doesn't sound silly at all. As mentioned fibro is defined as widespread pain especially in joints but also in the ligaments that join muscle and bone. The neck, hips and lower back are all what are known as trigger points, there are eighteen in all but each of us is different. It's a very strange illness and can leave you exhausted, confused and in pain.

I would ask the GP to refer you to a Rhumetologist at your local hospital, this is the usual route as DRs can but are reluctant to give a diagnosis. The Rhumetologist can rule out other things like arthritis.

Just an idea, but if your feeling shakey then having your blood sugars checked for diabetes is a good idea.

Look after yourself

Patrick x

Claire91 profile image
Claire91 in reply to Hartleyhare2

Thank you for your reply Patrick

I've not long had blood test done and my doctor says there's nothing to worry about.. everything you've just said I've got I just want to be able to get up each morning and feel "normal" again as such

Thank you x

BlueMermaid3 profile image
BlueMermaid3

Hi Claire91

Do you have a supportive GP? If so, make an appointment and ask him or her for a referral to someone called a Rheumatologist. They specialise in diagnosing Fibromyalgia.

Take a list of all of your symptoms with you to your GP appointment.

It is often beneficial to take someone with you to your appointment for moral support.

Getting a definitive diagnosis of Fibromyalgia can take a very very long time, sometimes years as other illnessses like Lyme Disesse and MS have to be ruled out first.

It may also be a good idea to start keeping a pain diary. Just jot down where your pain is, how bad it is and how long it lasted.

This will help your GP and your Rheumatologist when they see you.

Good luck and please do let us know how you get on.

Wishing you much peace

Lu x

Administrator

TheAuthor profile image
TheAuthor

Hi Claire91

Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read that you are suffering and struggling so much and I sincerely hope that you can ascertain a diagnosis one way or the other soon my friend.

I have to admit that I could truly relate to your post but for other reasons than just Fibro. I suffer with Costochondritis in my ribs and get terrible pain there. I also have spondylosis in my neck and can relate to the pain and arthritis in other parts of my body. Sadly, these other medical conditions have to be ruled out prior to a Fibro diagnosis.

I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you

Ken

Glosgran profile image
Glosgran

Hi Claire.

You are in the most frustrating stage when you know that things are certainly not right and you are suffering a variety of random symptoms but no one seems to be taking you seriously.

Try your GP again and go armed with a list of symtoms with as much information on the history of the onset etc. I wrote out a history stretching back to my childhood and teens (I was then on my 50s) with any similar causes or symptoms that I thought could be relevant. I used to print off a copy to take when I went to any referral and it was easier for the professionals concerned to read my story rather than go through the longer process of asking questions to get the overall picture. It was a switched on podiatrist who eventually took me seriously and referred me to a musculoskeletal specialist who then got the ball rolling by saying that the most likely dignosis would be MS or Fibromyalgia. I started researching all I could find on FMS before I saw the neuro and realised that it ticked all the boxes. He was able to rule out MS so then it was a referral to a rheumatologist who eventually diagnosed FMS after finding 14 out of the possible 18 tender points.

In my experience the more aches and pains you have the more you subconsciously you tense your muscles and this leads to more stiffness and pain. Some things that help are soaking in a bath for approx 20 minutes to which you add about a cupful of Epsom Salts (Magnesium Sulphate). Don't buy from a chemist as you'll only get small quantities and it works out expensive. I have seen it for sale recently in a discount chain store called Home Bargains, if you have in your town, or I bought 10kg for less than £10 on Amazon as it's sold in large quantities for gardeners.

Relaxation exercises are good as it helps if you can identify when your muscles are tensed and learn to consciously relax them. Lots of guided relaxation downloads available online. Take a look at Russell Stubbs' website called fatigueguide.com - he has a lot of free resources, downloads and helpful videos on his website and also themeditationpodcast.com for guided relaxation podcasts including help with relaxation and falling asleep.

If your GP is unsympathetic then maybe try self-referring yourself to the local physiotherapy service at your nearest hospital. Ask if they can help you and whether they can also refer you on to a local pain management course which will be a great help in giving you strategies to manage your symptoms and improve your condition.

When we are in pain and fatigued the last thing we usually want to do is any form of exercise but if you can begin to gently stretch your tightened muscles and then also increase your energy levels slowly by going out for a short walk, if it's only as far as the gate on the first day and then build it up by going a little further every day. Learn to breathe slowly and deeply when you're in pain as relaxing rather than tensing makes a big difference.

I have a heat pad that helps and also use warming muscle rubs such as Woodlock oil or even Olbas oil. To relieve the lower back pain and pains travelling down your legs (maybe sciatica?) I get relief from sitting and gently moving on a gym ball. Maybe you could try borrowing one from someone who may have uesed it in pregnancy. I bought mine fairly cheaply at Lidl. They way you sit has a big impact on your pain so sit in a more upright chair with your spine straight and top of your head pointing to the ceiling and put a rolled up towel in the small of your back for support. Try to be aware of your posture and straighten up if you begin to slump.

You will learn by trial and error what works best for and it's good to take control of your own situation. Another one is try to avoid stress - easier said than done!

Hi Claire and welcome to the forum your neck probs could be cervical spondylosis and an X-ray will confirm this - I've had it since 1986 and you will have good days along with bad days - I've also recently been diagnosed with Fibro.

What I would also say is to get a thyroid function test along with TPO and vitamin bloods - shakyness and weakness plus everything else going on could be your thyroid - this can very easily be missed if doc doesn't do it and I believe that it's a common fault for GPs to miss - which I have found out the last few weeks or so.

Thyroid uk site is the place to read up on symptoms for hyperthyroidism and hypothyroidism

Hope this helps. Take care 🎄🎅🏻

bluebell99 profile image
bluebell99

Hello Claire and welcome to our friendly fibro forum where you can get advice, support, help and information. Have you seen our Mother Site fmauk.org ? Here you can learn everything fibro and access links and guides.

If you look to your right under Pinned Posts, you will see instructions on on how to navigate the forum, including locking your post which is what we recommend for your internet security.

Hope to see you around the forum.

Kay

birth-1954 profile image
birth-1954

HI IVE JUST BEEN SHOPPING TOO,EXACTLY THE SAME T HING HAPPENS TO ME, BY THE SOUND OF IT ALOT OF PEOPLE EXPERIENCE THIS SURELY WE CANT ALL B WRONG.

Claire91 profile image
Claire91 in reply to birth-1954

What symptoms do you have if you don't mind me asking? Xx

Newtali profile image
Newtali

I would recommend heat pads, massage, (you can buy some self massage tools on line) osteopath, stretching muscles, Pilates and Linnex, which is a really good heat stick, like a deodorant stick. It is my life saver and I think it is the best pain relief going. You only need to use a tiny amount as the heat is very intense. You can only buy on line. It costs about £20 inc postage but lasts ages. Google Linnex.

Hope and pray you find some relief.

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