Is it Fibromyalgia?: Hi Community, My... - Fibromyalgia Acti...

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Is it Fibromyalgia?

HellyLlewelly profile image
7 Replies

Hi Community,

My Dr has told me that he's seeking to go through the proceedure of trying to diagnose me with Fibromyalgia telling me its an 'elimination' type of diagnosis.

I have been very physically unwell for some years and symptoms are worsening. I also have endometriosis which has reoccured post Total Hysterectomy b.so.

The worsening symptoms I have are:

Chronic Fatigue

Nausea

Muscle/joint pain

In particular in my upper arms, shoulders

Low mood

Anxiety

Reocurring mouth ulcers

Hopeless thoughts

Susceptible to Thrush

Pins and needles in fingers and face

Involuntary leg twitches are quite new

Chronic back pain in coccycs

Cognitively slower

Dropping items

Brain Fog, losing words

Hair thinning out all over

Nails growing upwards and bad quality

Lethargic

No Motivation

......

Im devastated as to what Ive become and seem to have no fight left in me.

Im too sore to exercise and have suffered two flare ups in the new year when trying to better myself with exercise.

I feel like my life is over and it cant be, I have a 4 yr old boy to look after.

Can anyone help me understand what tests he may put me through in terms on eliminating other conditions and for confirmimg Fibromyalgia?

I take a good multivitamin plus glucosamine sulphate plus cod liver oil daily off my own accord.

What kind of medication treats fibromyalgia? Are they mainly neuralgial pain relievers?

Thank you for any information in advance.

Helly.

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HellyLlewelly
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7 Replies
skit profile image
skit

Welcome to the forum!

Elimination is the only way they can be sure they have not missed some other cause. Some do bloods X Rays, Scans t add to a detailed medical history. Your life is not over if the diagnosis is Fibro Helly. Everyone has purpose and a contribution to make. Take things slowly. Exercise of the gentle type does help Fibro pain and stiffness. Ever thought some of your symptoms are hormonal? Not everyone with Fibro has all the issues you have listed.It is called a syndrome as its a collection of symptoms.I went through physio,X rays and blood tests but an orthopeadic chap used the word 1st when I presented with neck issues.

In terms of medication that depends on who you see and if you have any other conditions which mean other meds.

Again Fibro differs from person to person so what suits one may not another. Basic NICE approved treatments for specifically Fibro include Gabapentin and Pregabelin. Some will be prescribed low dose antidepressants to help relax muscles especially at bedtime.Leg twitches are quite normal in my experience. I attend a support group so get a lot of information over a range of people and/or carers in face to face situation. Check out fmauk.org for nearest group to you and also a booklet on Fibro in easy to understand language.

Gentle hugs

HellyLlewelly profile image
HellyLlewelly in reply toskit

Thank you so much.

Im really struggling with life and as I feel Im already pilled up, Im fearful of more pain relievers.

I can trace most of my symptoms going back 5 years, the leg twitches are new in the last month to 6 weeks.

Thank you for your response Its really helpful and encouraging.

Helly.

AllthatGlitters profile image
AllthatGlitters

Hi Helly

I was diagnosed after many years of visiting the doctors for blood tests, low iron count, aches and pains which felt flu like. I loved GP and found one that took me seriously & she discovered I had Fibro by looking back my medical records and also about the information I was giving her about my symptoms. Your symptoms are pretty much what mine are - it’s rubbish isn’t it.

I started off with amatryptalyne which done nothing for me, I then went on nortryptaline which made a big difference. Take codeine when necessary though for pain. You still get pain with this medication however I still feel it makes a difference as I remember how I use to be without it.

You will get lots of support on here from lovely people and remember to do what you can, don’t think about your old life when you could do this, that and the next thing as that will only depress you.

Find new hobbies, work alongside your GP to find the right medication for you, be kind to your body and have hot baths, sit down when you need to.

Xx

HellyLlewelly profile image
HellyLlewelly in reply toAllthatGlitters

Thank you

AllthatGlitters I feel like this is what Im strugglung with, the acceptance of who Ive lost, Ive just turned 40 and I camt settle at the idea that this is my new normal.

A couple of things have jappened recently that really pushed me over my limit, I feel my sister went at me and took my very last bit of confidence, my last shred of feeling like I had my protective wall up so that I can get through this life raising my son who is severely disabled, she made a big deal of the weight Ive put on and she told me I dont suit it. I have struggled since my hysterectomy last year going up 3 dress sizes.

My weight has been the last of my worries as debilitating daily pain and fatigue and painmanagement coupled with raising my son are my priorities then mental health.

I really and truly dont think she has put herself in my shoes and tried to imagine the pressure I am under.

I buckled and fell out with her as I tried to explain to her I was holding on by a thread and she continued to scold me and try to put her expectations of me across.

I really feel unsupported and misunderstood by her.

You know when you really just need the help you kbow you wd offer given the same situation.

Thanks so much

Helly.

Yellow-sun profile image
Yellow-sun in reply toHellyLlewelly

I know what you mean about age,im 42 and the last 2years have been rubbish im so grateful for this site,stay strong 🤗x

Clarrisa profile image
Clarrisa in reply toHellyLlewelly

Nagging family members over food & resulting weight issues are so common in diabetic circles, I’ve heard them (the nags) referred to as “Type III.” They drive diabetes nuts.

I lost support of a sister years back when I needed her the most. I have a small inking what you are going through. It really hurts to say the least. We are back in touch with each other now.

A doctor recommended I try Tai Chi. I should as there is a class nearby me. The write up says it uses “slow circular movements & deep breathing.” I see another type offered there too called Tai Ji Quan. I will have to try it out this week.

I hope some of our ideas help you, & you are feeling better soon.

AllthatGlitters profile image
AllthatGlitters in reply toHellyLlewelly

Hi Helly if your sister makes you feel like this even after you have explained to her how it makes you feel and how you are struggling then she should be ashamed of herself. You are caring for yourself, caring for your son, probably trying to pay bills and look after a house, you are doing well and don’t let anyone tell you that you are not.

Unfortunately family seem to think they have a right to say anything they like, if that happened to me I would distance myself from that person. You have to be mentally well too when you have an illness, people don’t understand because it’s not then going through the pain or the emotional side of it. I totally get you as I have a history of people being so nasty due to my illness.

If you ever need to chat, PM me.

Xx

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