What's wrong with me : Hi I am a 3... - Fibromyalgia Acti...

Fibromyalgia Action UK
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What's wrong with me

Jameswhitt
Jameswhitt
β€’31 Replies

Hi I am a 33 year old male that wants answers and I'm fed up of getting nowhere. For quite some time now I have really deep aching legs, arms wrists I want to feel normal like I used to but just don't. I've been to my gp about the same issue a few times who I don't feel takes me seriously and once even caught her rolling her eyes as if I was a time waster do I put of going. Hower I have had blood tests done and they came back OK was refured to se a consultant who did nerve ending tests and that showed nothing was refured to a physio that was pointless as I knew I'd be able to everything I was asked to. I don't feel as aware of the symptoms when I'm at work but when I'm back home in my own time become obvious again when I get up in the morning I feel rough as the list goes on. Is this fibromyalgia would you say. Sorry to keep going on but I'm so fed up of the way I feel everyday for years now I dont know what to do.

Edited by Admin Sorry, but this post appears to have gone off tangent. Whilst the issue relating to checking Thyroid should be taken, it is not the only differential DRs may consider when looking to find a diagnosis. Therefore the replies for this post are to be switched off :)

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31 Replies
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Hi very difficult to diagnose anyone with fibromyalgia I was diagnosed 3 years ago but have been feeling like you for a long time - I have had many many blood tests done (all came up clear ) and nerve tests, x-rays, MRI, seen neorogical and rheumatoid guys, physio therapist over a long period - and everything is fine (they tell me !) But I knew I had fibromyalgia for years my husband and I researched and read and changed my diet and used pacing and exercise and was actually relieved when someone agreed with us - I can only tell you my symptoms - fatigue, all over pain (especially morning and overdoing it or sitting too long) can't sleep, anxious, weight gain, weakness in legs, spasms , don't travel well , also few other annoying things, I wish you well - you need a good understanding doctor to start with. Neese

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honeybug
honeybug
in reply to Hidden

Comment removed

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honeybug
honeybug
in reply to Hidden

Comment removed

verywellhealth.com/the-thyr... i think dippy dame is quite correct,and she is not such a dippy dame- you couldnt get better than Dr.Lowe on this report.

bluepettals2 πŸ˜ŠπŸŒΈπŸŒΏπŸ¦‹

Thank you for the link and the much needed information re fibro and hypo.

I was diagnosed in 1992. Back then it was new and little known about it.

I am glad you taught me about this as my doctor did not.

I stand corrected and will retract my reply.

πŸ˜ŠπŸŒΈπŸŒΏπŸ¦‹

honey bug that is very commendable of you- we are all still learning but if a thyroid waslow and fibro's ar esuffering it could just help them to find out- TSH though is theonly thing tested and you willneed ft4 AND ft3 which they willnot do. Tsh alone is not enough- itis just a stimualating hormone and it HAS to convert tothe active hormone T3.

honeybug
honeybug
in reply to Hidden

DD πŸ˜ŠπŸŒΈπŸŒΏπŸ¦‹

bluepettals2 gave me a link. I read it and as I mentioned before have learned from members like you. Again I apologize if I offended you.

You were right I was wrong.

I will delete my reply to James.

Mdaisy
MdaisyAdministrator
in reply to honeybug

DippyDame bluepettals2 This member has removed their reply although I feel this wasn't necessary to do so, however they did so humbly. As you've highlighted discussion is welcomed and others comments should be respected if they were meant in a well meaning way. The written word can be misinterpreted and often if you ask members to explain what they mean it isn't meant how you may have thought it was and vice versa.

Please see my reply down below regarding Thyroid which is one possibility to think about for this young man and it is good to highlight this however for further discussion & debate it might be worth signposting to TUK instead. It can be a polarised debate (as you know from previous conversations here) and everyone has their own opinions on various topics and/or limited knowledge about symptoms of chronic illness etc so we are here to discuss these respectfully as you've said. :)

I think this matter has been resolved and that you all have put it behind you all.Let's move on now and get back to supporting each other as we all understand! :)

Emma :)

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Mdaisy
MdaisyAdministrator
in reply to Hidden

Hi DippyDame

The Thyroid Debate continues and Dr Lowe's research was not peer reviewed source therefore the validity is questioned by some. I think this is like the chicken and the egg to be honest as to their connection, looking at Thyroid results and using Thyroid medication may work for some Fibromyalgia patients - the percentage we do not know however this is not a blanket treatment for all patients living with Fibromyalgia.

Many, many NHS testing needs to be improved before we can work out the mess that is chronic illness as Thyroid, Lyme to name a few need better testing to work out the correct diagnosis of those with synonymous symptoms. Also as before on all areas of any connection plus general research needs to be done so we can understand the complexities of all these medically unexplained illnesses as they as so called.

Thyroid is one differential to be considered alongside many others. I am sure the newbie appreciates you highlighting this and if the member wishes to discuss it further as you did they can visit the TUK community. It is difficult as I say it is a polarised debate with different views depending on the research you've read and experiences you'd had personally - a tricky subject that for a newbie may be too much information overload I think.

Hope you're well

Emma :)

bluepettals2
bluepettals2
in reply to Mdaisy

hello mdaisy, after being very unwell with thyroid and lyme and having to do a lot of investigating for my own benefit- the thyroid is a master gland and Dr Lowe was a trusted and wellloved doctor until he died, his site and clinic i think is still running, unfortunately wiuth thyroid, many doctors an d endo's do not understand what is involved and how many pathways are involved with endocrine , i shall thank honeybug and i hope i didnt offend anyone a si am still searching and learning myself- but a lot on tuk have had fibro and found out thyroid was low.

Mdaisy
MdaisyAdministrator
in reply to bluepettals2

I understand after searching for answers myself however it is not yet known due to all the inadequate flaws in tests, research and lack of records how many people with a wide range of chronic illnesses fall into which brackets (meaning how many in percentages are misdiagnosed). Therefore until such times we can only do as best we can to help people to know what other conditions present in the same way and hope the medics interpret those results correctly.

Petitions are the way to go to bring about change and enlighten us to the actual scale of the problem rather than asking each individual with Fibro to double check everything as not all will be subject to a misdiagnosis. I don't think we can say just that all Fibro has a Thyroid element as it is a bit like saying all Chronic Lyme have Morgellons. We need the data and more research in all these fields which are unfortunately not forthcoming. The late Dr Lowe was highly thought of I know but as his research was not printed in a peer reviewed journal it would need to be repeated and added to such a journal to have more weight.

So to summarise the whole chronic illnesses community needs research and patient power to get NHS testing to be more accurate. But for a newbie in this instance I think the main differentials to be discussed would be appropriate at this stage rather than moving toward one specific course only to find he personally has no Thyroid issues and has to retrace his steps.

Hope you understand my points as understand why I mention them. I hope you are surviving the hot weather and enjoy the rest of the evening. :)

Emma :)

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Mdaisy
MdaisyAdministrator
in reply to Hidden

My words in regards to this Newbie ( Jameswhitt ) where not in any way meant to be partonising. In fact I just wanted the new member to settle and have time to collect his thoughts before a range alternative diagnoses. The initial post was for support and yes, Thyroid is one of the issues to look at but as you rightly said the post has turned into a post solely discussing this.

I tagged you both in my reply, so I did not need to type 2 replies and you only need to take from it was is relevant to you. Also, to also address the 'newbie' point, it is a commonly used phrase to describe a new member and also I did welcome this new member by name also.

I think that this post has now run it's course for today and unfortunately this means further replies are to be switched off. I hope James you are happy to start a new post to further introduce yourself to the community :)

Emma :)

Hi jameswhitt πŸ˜ŠπŸŒΈπŸŒΏπŸ¦‹

I’m sorry you are suffering and having such a hard time of trying to get answers.

Best wishes abundant blessings.

πŸ˜ŠπŸŒΈπŸŒΏπŸ¦‹πŸ€—πŸ’—πŸ˜˜

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honeybug
honeybug
in reply to Hidden

Comment removed

that is shocking honeybug to tell james to accept his 'fate'---your 'non sugar coated truth' is a depressive negative, awful attitude i am sorry to say,-- i had been very unwell for years, my symptoms were bizarre i thought i was on my way to checking out of this life- BUT i am still here and i am not great but hey- iam much better than i was--- and my motto is this--- NEVER give up, strive forward and have apositive attitude, when you expect the worst you will get the worse.

that lad is 30 years old!-- he can look up stuff , he can get a consultant ( privately) that is why we have an internet and he can go over to thyroid uk where he will get a lot of advice and help. positive attitude is a start. an dthyroid and fibro ARE connected.

Hello Jameswhitt nice to meet you and welcome to the group. There are many reasons you could be feeling the way you do. Yes it could be fibro but it could also be something treatable like depression for example. Maybe another word with your GP or another one you feel comfy with would be a good idea.

You say you have had blood tests done. From my experience they tend to test for any thyroid problems at the same time. I don't have a thyroid problem but I would have thought if it was that you would feel the symptom all day long not just when your away from work.

You may like to lock your post for privacy reasons. It stops what you post seen by others on the net. It may also generate more replies from the members here. Many who prefer to answer to a locked post. If you wish to lock yours this link will show you how to do that :)

healthunlocked.com/fibromya...

May I just add that looks like your real name? For the same privacy reasons you may wish to change it. You don't have to its your choice. I'm just trying to give helpful advice as you are new to the group I hope you don't mind.

Our main information site is fmauk.org why not take a peek it is full of very helpful information you may find useful.

I hope we see you continue to post. The members support here is second to none. I do hope you can have a good day :) xx

Momo

You will feel better at work as your mind is occupied. When you get home and you relax you are then aware of the pain. Try something to take your mind off it - a hobby, music in the background etc. When you get up in the morning until you get your muscles functioning you will feel rough - a bath or long warm shower helps. I can understand your frustration, all of us on this site feel that - the only answer is try not to give in - it is a mental battle and you have a fierce opponent to either beat or meet on mutual ground. Good luck

Mdaisy
MdaisyAdministrator

Hello DippyDame bluepettals2 & honeybug

Thank You for your responses and I think it is always good that members want to help support new members to ensure that all differentials of possible alternative diagnosis are explored. There are many conditions presenting to DRs in the way this newbie is explaining that should be ruled out before a diagnosis is made. Thyroid issues as you pointed out would be one of them as per the post below and TUK statement on their website as previously posted.

About Fibromyalgia & Thyroid Issues

healthunlocked.com/fibromya...

thyroiduk.org/tuk/About_Us/...

Thank You for your comments to this newbie all of you and everyone should be able to express their feelings to a member or possible further investigation without criticism or judgement as per guidelines. However, I wondered if I could ask you all to consider the newbie who is confused at the moment and must have many questions about your comments. There are many other conditions that might need to be ruled out ie MS, Lyme Disease, RA, Polymyalgia Rheumatica, ME/CFS etc .....etc. Can I please sincerely ask that we let the member settle in a little and take in all the information at a slower pace - although intentions to highlight areas are good sometimes people need time to process information rather than being presented with so much information directly as they join. I hope you understand we hope to provide a supportive and friendly community plus considering providing members with information at a slower pace maybe better in this instance.

Jameswhitt Welcome by the way - we are a wonderful supportive community and members are passionate in helping each other and providing lots of information too. I can completely understand how you are feeling having been through the diagnosis process and the journey can be frustrating to say the least. We have other gents on here who have Fibro and also been through this that you can chat to and relate too as well as the ladies experiences. As many conditions can present with pain and fatigue the DRs do have a lot to consider before settling on one diagnosis as you can tell from the comments. If you are finding it difficult you can ask for certain referrals, check for copies of tests they have done and don't be afraid to ask what certain things mean and what conditions this rules out (maybe make a note somewhere as a personal record).If you find healthcare professionals dismissive and find yourself needing a second opinion you can ask for this too.

For now we'll let you settle in and ask any questions you'd like to. Thyroid test should be done and any further discussion about this results might be worth posting in the Thyroid UK community for help. But, there are other things that need to be looked into rather than just thinking about this test and I'm sure others will be able to mention these as they bump into you around the community.

Welcome to the FMAUK Community ! :)

Emma :)

Jameswhitt
Jameswhitt
in reply to Mdaisy

I have had a full blood count done a few times that my gp tested for what she said is most things including thyroid, liver test b12 etc the b12 was low so was having b12 injections it didn't make me feel any better but I no longer have them. I was also told I'm showing signs of that of Gilbert's.

bluepettals2
bluepettals2
in reply to Mdaisy

also Mdaisy lyme is not recognised here- i am antibodies to lyme and it is better to get a private test- however as you say- one day at a time for james, he will learn and know where to go for tests. alot of thyroid people have lyme and there are ways to deal with it , and support groups. but hopefully he wont have that. theer is also minerals and vitamins to consider- inflammation and food intolerances. one thing at a time.

You sound like me, I've had symptoms since childhood but was diagnosed in 2012 firstly by neuro who said I had chronic fatigue syndrome then a rheumatologist diagnosed fibro and Osteo Arthritis. Don't hold your breath for any treatment though as even with a diagnosis the treatment options are virtually non existent unless you fancy a go on the opiate merry go round. Sorry to sound negative but Im probably still non the wiser as to what's wrong with me except now I have a label that seems to give NHS Carte blanche to write me off. I sincerely hope you don't have fibro but if it turns out you do there are plenty of people here to support and advise. xxx

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