Help please : Hello my name is Anna, I... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Help please

Annab124 profile image
38 Replies

Hello my name is Anna, I am 21 and think I might have fibromyalgia. So it all started back in around April last year where I was getting panic attacks and bad anxiety aswell as heart palpitations. However this stopped , I then progressed to get chest pain and later back pain. For a few months now on and off parts of my body hurt to touch (chest , ribs under armpit, arms sometimes , palms of hands sometimes and my back) . Some days I feel fine an feel like it’s almost gone then other days feel so bad . The last 3 days my chest and left shoulder an back has been in lots of pain . I have also felt really lightheaded an my eyes have felt strange as well as my ears . I had bloods done Monday which came back fine .. I just don’t know what’s going on

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Annab124 profile image
Annab124
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38 Replies
Dizzytwo profile image
Dizzytwo

Hi there, nice to meet you and and welcome to the group :)

You may get more replies if you lock your post. You don't have to but for privacy reasons you may like to think about it. Unlocked posts can and will be picked up by the big search engines. You may find what you have posted may end up on Google, FB etc. If you wish to lock this and any other post this link will show you how :)

healthunlocked.com/fibromya...

I think the best thing you can do is make an appointment and talk to your doctor. You may have fibro but only your GP can tell you that I'm afraid. We are not medically trained to give that kind of advice I am sorry.

But we are very happy to help support you and share our own experiences. Sometimes talking to others can be a help. Take care and please talk with your GP :)

Momo

Annab124 profile image
Annab124 in reply toDizzytwo

Thankyou ! Please may you tell me what symptoms you have

Dizzytwo profile image
Dizzytwo in reply toAnnab124

Hello Anna, I have had Fibro for 30 years. We all suffer in diffrent ways. So I am not sure knowing how I suffer would be of help to you to be honest.

But my symptoms have taken many years to get me to where I am now. But how I feel may never be how you feel if that makes sense. I have to use a wheelchair now due to pain. But I also have OA in my body and spine.

Untill you have it checked out with your doctor and have got a diagnosis it's not going to help you much I'm afraid. After all fingers crossed you may not have fibro at all but something else. This is why it's important to speak with your GP. Xx

Annab124 profile image
Annab124 in reply toDizzytwo

I hope your okay !! Thank you very much xx

Dizzytwo profile image
Dizzytwo in reply toAnnab124

Thank you,would you like help to lock your post or are you happy to leave it open :)

Annab124 profile image
Annab124 in reply toDizzytwo

I’m happy leaving it open x

Melter profile image
Melter in reply toAnnab124

Hi Anna..

I was diagnosed over 10 years ago and everybody tells me to try different things but u need to try different things to see which helps u best.. But a good day just means u have an ease in pain never pain free and if u do to much that day you pay for it for days afterwards..

All ur senses are effected by fibromyalga.. I took early retirement as I just couldn't cope anymore..

Hope I have helped a bit and not made u feel more anxious about ur condition.. Not many people are understanding.. So u just av to learn to blank them out and push to keep going don't go to bed and don't let it take over you as best u can xx

Annab124 profile image
Annab124 in reply toMelter

Sorry to hear that ! If you don’t mind me asking what were ur symptoms? X

Melter profile image
Melter in reply toAnnab124

Pain in back legs hips shoulders neck elbows wrists knees ankles and now feet... Bad headaches.. Blurred vision.. Depression..swelling in legs stomach arms and hands complete exhaustion.. I get very frustrated when I can't do things that need doing..

Sometimes a lot together and other days just a few of them.. When someone asks what wrong with you today I feel like telling them to XXXX of.. Hope this helps you.. Having a so so day today x

Annab124 profile image
Annab124 in reply toMelter

Thanks for sharing that with me much appreciated! Yeah someone in work said to me “I think it’s just all in your head” an that really annoyed me as some days I cry I get in pain so bad etc ! Thanks so much :) xx

MpJp profile image
MpJp

Sorry to hear your going through tough time i recently been diagnosed with fibro after suffering on/off for years my syptoms vary i have pain in my shoulders/neck hands/wrists knees and suffer with constant headache/eyesight aswell as speech problems maybe if your bloods have come back clear which mine continuously did ask to be referred to a rheumatologist they might be able to help hope you get sorted soon this forum good place to get help/advice💕

Annab124 profile image
Annab124 in reply toMpJp

Thanks for your reply much appreciated ! hope u are okay ! And what type of speech problems were u having ? X

MpJp profile image
MpJp in reply toAnnab124

Hi i get my words all mixed up/backwards and during mid sentence i forget what im saying but think thats down to the fibro fog i hope you get sorted soon 💕

Maryamnaz profile image
Maryamnaz

Hi dear Anna .I think you have to check ur body and meet a doctor! I have chest and uper back pain and stifness every morning .but first you go for a check up or a romatologist ! You need to see a Doctor for that ! 🙏get well soon 🙏

Hi Anna

Sorry to hear you’ve not been feeling great.

Have you had your iron levels checked. A lot of the symptoms are similar to vitamin and mineral deficiencies.

What are your eating habits like?

Definitely speak with your doctor and See what he says.

Everyone’s body is different but eating well and exercising (to your capabilities) has a positive impact on mental and physical wellbeing.

All the best

ipex001 profile image
ipex001

keep in mind that what you might be feeling is Anxiety it self i would check that out as well as your fibro

Annab124 profile image
Annab124 in reply toipex001

Thankyou ! I just don’t understand how anxiety could cause parts of my body to hurt to touch an give me back an chest pain etc . I’ve been positive recently An the only thing I stress over is my health x

Judithdalston profile image
Judithdalston

Fibromyalgia is really a diagnosis of exclusion ie everything else it is likely to be has been tested for by blood, or various scans, then usually a rheumatologist sees you. In my case he did the mirrored pressure point test ( and nearly shot of the examination table in pain) to give the fibromyalgia diagnosis nearly two years ago. But I had had various very painful spine, and related rob/ shoulder/hip etc problems for most of the previous 35 plus years. I still use a spinal manipulator ( trained in McTimoney chiropractor) for bad pain, and MOTed 6 weekly which helps. Do you know what bloods were taken said to be ‘normal’....at your age might have only been limited. Had your thyroid checked out...my fibro is worse when my hypothyroidism( of c.15 years) is undermedicated too?

Annab124 profile image
Annab124 in reply toJudithdalston

Oh really/: I had blood tested last week for lymphoma as I had lumps in my neck but they said all fine

Marz profile image
Marz in reply toAnnab124

You are legally entitled to have copies of all your results - so you can monitor your progress and check what has been missed. So often the GP will say Fine/OK/Normal - when they mean in range - it is where you are in range that is important.

With thyroid issues for example the GP/Lab may test the TSH - and very occasionally the T4 - but RARELY the T3 - which is the most important thyroid hormone - needed in every cell of the body. And so thousands are not diagnosed or correctly treated. Also Anti-bodies are rarely tested and there are two - Anti-TPO and Anti-Tg. The NHS - if pushed - may test the TPO. These tests rule out Hashimotos - an auto-immune condition and the most common globally leading to an under-active thyroid. Something I was diagnosed with back in 2005 after a fibro diagnosis in 2000. Without the correct tests done here in Crete I would never have known.

Also test the following - B12 - Folate - Ferritin and VitD. All need to be optimal and not bumping along the bottom of the range :-) - having good levels can improve matters hugely. Many of us have gut issues of some sort and so absorption can be impaired.

Thyroid inflammation could be one cause of lumps in the neck ... tonsils have a blood supply connecting to the thyroid I have read ... Hope you soon find some answers.

Judithdalston profile image
Judithdalston in reply toAnnab124

Only lymphoma? Lumps at both sides of neck or more at front? Think you will have to be patient and keep hounding your Gp for more tests, and referrals to specialists. As you may gather from Mars below many with hypothyroidism have to rely on diagnosis with full thyroid, antibodies and mineral/ vitamin blood tests from private labs as GPs usually limit themselves to FT4 and TSH tests to diagnose.

Annab124 profile image
Annab124 in reply toJudithdalston

both sides little bean shaped ones under the skin

Judithdalston profile image
Judithdalston in reply toAnnab124

As in line of under ear ? The thyroid is at front tho straddles wind pipe, so different place. If your go won’t investigate further for piece of mind you might need private bloods done!

Annab124 profile image
Annab124 in reply toJudithdalston

I had bloods done for lymphoma done an they said that’s all fine ? Why would I need more if it’s clear? Or do you mean for my back etc x

Jamsiet profile image
Jamsiet

Hi Anna

I only found out last week about my diagnoses. I printed off an outline of the front/back of a body and literally used coloured pens to mark areas that I have problems with. Different colours were used for permeant pain ; occasional/ numbness and pain points. My Doctor was impressed as rather than him losing interest, whilst I reeled off problem areas!!, he could see in colour!!

Seeing your Doctor is really a must and don't be 'fobbed' off. I was initially by my own Doctor, she arranged a lot of blood tests but didn't seem to be listening to my concerns. The 2nd Doctor couldn't have been more compassionate. He sat and listened, read my notes and apologised for my condition not being picked up previously.

Good luck and hope this has helped

xx

Annab124 profile image
Annab124 in reply toJamsiet

Thank you very much! What did you get diagnosed with ? An please may u tell me your symptoms x

Alyson66 profile image
Alyson66

Unfortunately it generally takes year's to be diagnosed due to all other medical tests to be done then ruled out x

Annab124 profile image
Annab124 in reply toAlyson66

I went to my gp today who said she thinks either fibromyalgia or anxiety

Sarahvit profile image
Sarahvit

Hi Anna, I would keep going back to your doctor. In order to diagnose fibromyalgia they need to rule out other condition that could present the same symptoms such as MS, lupus, hashimoto’s, depression with pain, or any other diseases that could cause the same symptoms. They do have a blood test for fibromyalgia but apparently it is expensive or not 100% accurate or some reason doctors do not use this blood test unless they recently started using the blood test. But be prepared to have several tests, scans, and seeing several specialist before getting a fibro diagnosis. You need to meet certain criteria’s such as wide spread pain in all 4 quadrants of the body for 3 or 6 months. It is a process. Hope this helps.

Annab124 profile image
Annab124 in reply toSarahvit

Thanks for your reply ! Do you know if anxiety can cause pains in your body ?

Sarahvit profile image
Sarahvit in reply toAnnab124

You are welcome, yes anxiety can mimic heart attach with chest pains. 😊💕🦋🌻🌷💜

I feel for you but this doesn’t sound like fibromyalgia I am chronic case for over 15 and what you are explaining is nothing like what I get but anyway stay here and we can all try to help you anyway

Annab124 profile image
Annab124 in reply to

oh really/: I’m hoping it’s anxiety but I just don’t get how it could cause my bones to hurt lots

in reply toAnnab124

Hello get the the right doctor get your self tested etc I hope you can get some help Have you seen my pos called fibro is

Annab124 profile image
Annab124 in reply to

I’ve been to the docs probs 20 times over it:( and no where do I find

in reply toAnnab124

You need to go to your GP get referred to a neurology explain how you feel the best you can You have to be strong in doing this unfortunate that you can look ok but in horrible pain I know that most members here that have been actually diagnosed with the condition have had a hard time of it all , as me it took 5 years to get it in writing This Don’t mean you will be the same If you look up NHS fibromyalgia it tells you what the decease is But take it from me for those of us who have got the real thing It’s a horrible cramping pain Stiff muscles , fibro fog , headaches soar eyes , dry mouth In some cases tinnitus Your get tired really quickly And worn out You get a horrible numbing pain to your body , I do know there are members here that haven’t got my severity So I prey you don’t end up like me I’m not a doctor I’m telling you how it is for me ok. X

concesoeu profile image
concesoeu

keep going back to your doctor until you get an answer. because there are so many symptoms it takes time for a decision.

jessiegirl profile image
jessiegirl

don't stop asking and keep pushing to get tested .i have had this since early 90s and prob before . good luck

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