Diagnosed a month ago!

Diagnosed a month ago!

Hi. I am new to all of this. I was only diagnosed about a month ago. I have been in so much pain for just over a year and it had become unbearable. I have to admit that my GP has been wonderful. She sent me to a chiropractor and for all manner of tests and just came out with it - 'you have fibromyalgia' she said. I read all about the illness on NHS Choices and thought - 'Is this for real?' Then I read all the blogs and I could relate to each and everyone, from migraines that have put me in hospital to neck, back and leg pain that has made me cry tears. I can even relate to the so called - 'fibrofog' that everyone keeps talking about! For a long time I thought that all the pain and all the sadness that I was feeling was all in my mind, a symptom of a man facing old age quite badly, (I am 50years old) until I read all of this. I don't know whether I should be relieved and happy knowing that I am not becoming somehow unhinged or very, very sad knowing that so many people are suffering this way? I do have hope though, my doctor has initially prescribed me nortriptyline for the pain and it has eased the pain on my right side to a level that is bearable. So I will go on and try to find the answers that I am looking for. Sorry to go on for so long. Thank you for reading this.

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  • Morning Ken,

    I hope I have your handle right - welcome to the site that you will find very helpful in all manner of ways. We are all in the same situation so immediately you know we suffer as you do have had the same multitudinous tests. Have gone from pillar to post in the discovery phase and now we are here - we have accepted we have Fibro and we still search for answers and relief

    There are so many of us our experience is vast and we share and care for each other. The site provides us with knowledge if you go to the \fibro action symbol the butterfly and click the site is very keen to assist us.

    Hopefully we can all get to know you better through your post. best wishes

    xgins

  • Hi Gins.

    Many thanks for your kind words and your encouragement. What strikes me the most is the fact that you know exactly what I am feeling at the present time! You have been here and survived it! My present is your past. You sound very knowledgeable on the whole subject so I hope you don't mind if I contact you this way on occasion if I have any questions?

    Many thanks for holding out the hand of friendship to me. I sure need a friend about now.

    Ken x

  • Hi Ken, welcome to this site, we are ll your friends, we call our selves fibro friends, sorry to ear you've this bummer of a desease, I've had it since I was 11 amongst. Other conditions, am now 72yrs old, they first diagnosed it as muscular rhumatism then later in life diagnosed it as fibro, as in those days no one knew about fibro, as time goes on you learn to accept it, not easy but once accepted makes life easier to deal with...there are times when I just break down and sob and say "why me" but then I reprimand myself and say, " well while its being given to me maybe someone else has by past it " ....if that makes sense , looking forward to reading your posts..and remember we are all here for one another and the volunteers are fab, infact all our fibro friends are fab, so welcome to our caring, sharing, loving, laughing fibro club....Dee x

  • Hi Cookie72

    Thank you for your message and kind words. It sounds like you have been through so much yourself yet here you are reaching out the hands of friendship to me. I really appreciate your gesture and your inner strength. I have said to everyone else that has written to me that I sure could use a friend at the moment. I know very little about fibromyalgia until I came onto this site a couple of days ago. However, if I look inside myself I suppose with all the pain I have suffered this last year or so and all the emotional hurt that has surfaced recently, then I guess I understand more about it than I first realised.

    You take care my new friend and I hope that if I ever have questions (and I am sure I will) that I can contact you and ask.

    Many thanks

    Ken (the author) x

  • Morning Ken (Author)

    Welcome to the site and please be reassured that you are among kindred spirits as Gins says there is a vast amount of experience here and there will always be someone to help answer any questions that you have.

    We talk about the serious side of Fibromyalgia and all it entails but also like to bring a bit of fun onto the site too in varying types of virtual trips that enable you to switch off and stretch your imagination :) The next one will be The Virtual Trip to the London Eye followed by River Cruise dining and after dinner dancing :) Not sure when though!!

    If there's anywhere you fancy us taking a virtual trip too please let me know :) they are free of course! and because the are virtual you can leave the illness at the door so as to speak! eat and drink what you like, be creative. :) I always think they are like one huge episode of Whose Line Is It Anyway? LOL

    warming healing fluffie cuddles

    :) xxxzebxxx :)

  • Hi zeb 73

    Many thanks for your kind words and encouragement. I really appreciate the friendship being offered to me; as I said to Gins 'I sure need a friend about now'. So I thank you for the hand of friendship.

    I am still trying to come to terms with everything at the moment and I know that I will have many questions in the coming months about all manner of things, so I hope that it is okay for me to contact you this way?

    I will give some thought to a potential virtual trip somewhere? It sounds fun!

    Once again, thank you.

    Ken (the author) x

  • you are most welcome :)

  • [Edited by Admin] [Link removed as per guidelines]

    You may wish to read this article. Sadly Dr Lowe is no longer with us and his very valuable website is in probate....

    I too was diagnosed with FM in the UK by a Rheumatologist - a downgrade from PMR. Many years later I was diagnosed with Hashimotos here in Crete. The Auto-immune version of thyroid illness. Of course so many people on this forum say they have had their thyroids checked and have been told they are normal ! Well sadly there is no such thing as normal - results may well be in range but not normal. All my Thyroid Tests were in range but the Anti-bodies were HIGH. So if they do not test the anti-bodies how would you know. Hashimotos is the most common form of thyroid illness throughout the world - auto-immune disease is on the rampage ! Diet /Gluten....?

    Normally just the TSH - Thyroid Stimulating Hormone - is tested in the UK and the range is usually around 0.5 - 5.0 and if you fall within that range then they say you are fine. In the US the upper limit of TSH is 3.0 which meant another few million people could be treated when the level was lowered in 2003. The TSH from the Pituitary Gland tells the Thyroid to produce T4 and that MUST convert into T3 which is the only ACTIVE thyroid hormone. It converts in many places within the body including the muscles. Low T3 = Muscle aches ! So without testing the FT3 - Free T3 in the blood - then you are in complete ignorance of the reality. There are simply trillions and trillions of cells in the body and they all need T3.

    The greatest demand on T3 is in the brain - where there are the most receptors - second highest in the gut lining. You don't have to be a genius to know how many brain and gut illnesses inflict the modern world.

    So the Tests for Thyroid are :- TSH FT4 FT3 Anti-TPO Anti-Tg. If your Doctor or the Lab refuses to test things in the correct manner then consider having them done privately. Offer to pay at the surgery and they may be so shocked they will organise them anyway. There are labs that will do it for you. Details on the Thyroid UK website. Sadly costs are governing medicine today and preventing wellness....Big Pharma makes BIG money out of all the painkillers, AD's. PPI's, Statins and so on when people are mis-diagnosed or under-treated....

    Also people who have low thyroid often have LOW B12 FERRITIN IRON FOLATES VITD - all these need to be high in their ranges and not just in range with your Doc saying you are fine - it is NOT fine. Rarely see these things mentioned/discussed on your forum. Medical school does not provide training on preventative medicine !

    I do my best to some help people here in Crete to understand their blood results and everyone I have seen has LOW T3 - either on medication or not. So there is a conversion problem going on - GOOD levels of B12 are needed for a good conversion of T4 into the active T3 at the cellular level. So even if you do not have a thyroid issue you may have LOW B12/Iron etc. which prevents the conversion of T4 into T3 and then creates all the symptoms. Also gut health is important as that is where there are so many T3 receptors....gut health is another HUGE issue and at the root of so much illness.....

    Sorry to have rambled. I was diagnosed with FM in 2000 - Hashimotos 2005. From being in constant pain and sleeping for hours I am now teaching yoga 3/4 times a week - started teaching at 65 - I play a little tennis - walk my dog - swim miles in the summer months - and am so much stronger. They are so good here in Crete in testing and diagnosis. I have had a life-time of illness/surgery and am now feeling so well....off course I have days when I feel stiff - but a good walk and some yoga sorts that one out !

    Am happy to answer any questions/concerns you may have. You can also check me out on the Thyroid UK HealthUnlocked ! It can be a bumpy ride - but one worth taking ! Wishing you good health and wellness soon ....

    Sorry forgot to mention - when you have bloodtests - ask for copies of the results - it is your legal right. It also sends out a strong message that you are taking control of your health. We look after all our own records here in Crete.....

  • Hi Marz

    Many thanks for your kind words and encouragement. I really appreciate all the friendship and offers of help I am getting as I really need it at the present time.

    You mentioned quite a few interesting facts in your mail. I have had my thyroid tested so I will ask my doctor for a copy of the results. She appears a good doctor so I don't anticipate any problems. I also had a test for another auto immune disease called lupus as I was having so many problems. However this came back as negative. I do have several other health issues such as chronic asthma / COPD and arthritis etc. As a matter of interest, my mum had all the same issues when she was my age. Sadly I lost her many years ago. I am not sure if Fibromyalgia was ever known about back in the 60's and 70's? I also have an extensive list of allergies! I never used to be allergic to anything but now I cannot have lactose, artificial sweeteners, soya and an array of other processed foods.

    I hope that it is okay for me to keep in touch with you this way in case I have any questions regarding these tests etc?

    Many thanks for your hand of friendship

    Ken (the author). x

  • Hi Ken

    It was good to receive a reply - thank you ! Regarding your Mum - I am afraid Fibromyalgia - FM - was not talked about in the 60's and 70's as it wasn't around ! FM is the name given to CFS/ME in the States. Up until the very early 70's patients with thyroid issues were treated with porcine thyroid - a natural product. They were also diagnosed by clinical signs and symptoms - as there was no blood test. Then along cam BIG Pharma and decided the Natural Thyroid was unstable - they put out the information into the medical world - and invented the TSH Test and introduced the synthetic T4 tablet ! Hey presto you have a recipe for disaster. You may also notice they did the same with diabetics - again with disastrous results - rarely reported ! Over 200 million people take T4 - nice earner :-)

    People were missed on the TSH test ( which is the unreliable gold standard ! ) and not treated and others - when they changed over to the synthetic thyroid treatment were undertreated. Hence all these people with aches and pains, brain fog, depression and other associated ailments were struggling. In other words their thyroid symptoms did not go away. As you know - in the States - you can only claim on your Medical Insurance if you have proof of a condition so something had to be done. That is when the matching painful points diagnostic tool became a diagnosis for a new condition.

    So any doctor training after the 70's - and that's most of them - will be unaware of how things were with the diagnosis and treatment of thyroid in the past. For instance when patients presented with raised cholesterol they would treat the thyroid - as lowered metabolism affects how the cholesterol is moved around the body from the liver. The thyroid is the master gland of metabolism and there are at least 300 conditions where the thyroid is implicated.

    Am sure your doctor is good and is doing what is needed - but could be missing the point. You have had your Lupus anti-bodies checked - so how about having the thyroid anti-bodies checked - which I have detailed above. Asthma and COPD are both mentioned in some lists of Signs and Symptoms of Thyroid. Please read my previous post regarding the very basic tests that are required. Take a look at Dr Michael Holick talking about VitD on YouTube.....

    Check out vitamindcouncil.org b12d.org thyroiduk.org

    There is a great deal we can do for ourselves. There are over 12,000 people on the Thyroid UK Health Unlocked so lots of experience/stories of GP's missing the diagnosis for years. Training at medical schools on the Endocrine System is woefully inadequate. In the past T3 - the Active Thyroid Hormone was used to treat depression and still is. Taking VitD and B12 etc. will help the depression/low mood. It is also a thyroid symptom....there are more T3 receptors in the brain than anywhere else - low T3 = low brain activity ! The next highest amount of receptors are in the gut - and the brain gut connection is HUGE !

    Regarding your allergies - I would certainly consider going gluten free - you may find your pain disappears overnight. Now that's another page or two ! We are not designed to eat the very hybridized wheat that is grown today. I have just watched an on-line summit on gluten - called The Grain of Truth - absolutely brilliant. 29 experts from around the world discussing the world crisis in illness and gluten. Wonder how many docs saw it ! Check out GGF - Gluten Free Guerillas on HealthUnlocked !

    Please do not sit back with a diagnosis of FM - it is a syndrome. You are very poorly and need the right diagnosis and help. Remember I was that person with a FM diagnosis. I also have Hashimotos which is the auto-immune version of Thyroid, had Crohns diagnosed 40 years ago. I also had ileo-caecal TB in my 20's. Have had 13 operations including the spine - so I know a bit about pain and the energy required to heal. It has been a long on bumpy road - but am feeling well at last....

    Apologies for the length again ! Reading and learning is the treatment in my book ! :-)

  • To all members please may i add

    'Fibromyalgia syndrome (FMS) is now a recognized clinical entity causing chronic and disabling pain. For several centuries, muscle pains have been known as rheumatism and then as muscular rheumatism. The term fibrositis was coined by Gowers in 1904 and was not changed to fibromyalgia until 1976. Smythe laid the foundation of modern FMS in 1972 by describing widespread pain and tender points. The first sleep electroencephalogram study was performed in 1975. The first controlled clinical study with validation of known symptoms and tender points was published in 1981. This same study also proposed the first data-based criteria. The important concept that FMS and other similar conditions are interconnected was proposed in 1984. The first American College of Rheumatology criteria were published in 1990 and neurohormonal mechanisms with central sensitization were developed in the 1990s. Serotonergic/norepinephric drugs were first shown to be effective in 1986'(Inanici & Yunus 2004)

    ncbi.nlm.nih.gov/pubmed/153...

    As you may know and can now read from the above Fibromyalgia or Fibrositis (as it was known previously) has been noted in some way by medical professionals over the span of time discussed above.

    I hope you find this interesting

    Emma :)

  • Hi Emma Thanks for this, I had read some of this quite some time ago when researching I actually tell people about the history and the fact it was originally called fibrositis in the early 20th century and funnily enough had that conversation with a friend last night who asked what my illness was. Spooky that you should post this :o

    :) xxxzebxxx :)

  • Thank you Mdaisy.

    I had no idea that the diagnosis of fibromyalgia had been around for so long. Thank you xx

  • History is always interesting - and the PubMed report mentioned above was in 2004....so quite recent history ! Things are constantly changing. There have been great changes in the last ten years - Functional Medicine being one example.

    Of course it is important for the Americans to get a handle on syndromes - without evidence of their conditions they are not able to claim on their Medical Insurances when needing assistance. That must be tough....

  • Thanks Marz - Never actually thought about that. Any country with a medical insurance scheme would obviously need a diagnosis! Am having trouble thinking about these things at moment stuff isn't being processed in my brain I don't think. Thanks - Ken

  • Welcome Author, you are not old at 50 - I have just turned 50 & am fighting to stay feeling young!! It's one of the probs of fibro - feeling old before your time, past it, getting ready for the retirement home......!

    I was relieved when I got my diagnosis - at last I could tell people I had a name for my condition, & it wasn't hypochondria!

    Once you get your meds & pain relief, physio, etc. sorted, you'll be feeling better. There's lots of things that can help from gentle exercise, heat pads, to cbt & you can always post on here for a moan or a chat & help. I've found it's a great site - just knowing you're not alone & that others can empathise with you is such a great help.

    Hope to see you soon on the Virtual River Dining Cruise, :-)

    Julie xxx

  • Hi Julie63

    Many thanks for your kind words and encouragement. I keep telling everyone that 'I sure need a friend about now'. So I really appreciate your hand of friendship.

    I am finding it amazing that everybody really understands what I am going through. You have all been there and got the t-shirt! My pain relief at the moment is sort of satisfactory. The real issue I have at the moment is my emotional state, and I am not really convinced it is because I have been told I have fibromyalgia, I think it is as a result of the fibromyalgia? I always used to be a strong person who could cope with anything, but now I can cry at the slightest thing! I have read that depression can be part of the course with this illness but I don't feel depressed, just emotional. I hope this is making sense to you? But I am sure you know exactly where I am coming from?

    I hope that you didn't have one of the ordeals trying to get a diagnosis? I have read that so many people have undergone a torrid and torrential time trying to get diagnosed. Mine was straightforward, my doctor was really good about it.

    Anyway, I hope it is okay to keep in touch with you like this as I am sure I will have so many questions in the months ahead.

    Once again, many thanks for your friendship

    Ken (the author) x

  • Hi Auther stay strong and keep fighting and everything that has been said by the others . soft hugs

  • Hi kathlaidlaw

    Many thanks for your kind words and encouragement. I keep telling everyone that 'I sure need a friend about now'. So I thank you for your hand of friendship.

    I hope that I can keep in touch with you this way as I am sure that I will have so many questions about my condition in the months ahead?

    Once again, thank you.

    Ken (the author) x

  • hi theAuthor you can send a post any time you feel you need to and we are always here for you all of us . There is always some one to talk to any time day or night , so you are never on your own , so don't ever think there is no one and you are on your own as you have now go hundreds of freinds so soft hugs and keep your head held hi you have done nothing rong so keep your head held high

  • Hiya welcome xx please ask anything you like there is always someone to help or talk to, 50 is not old, you sound lovely, hopefully medication etc will help it may take a while, but we all have good and bad days but always remember to come on here it really does help x as for the mind mine has always been a bit strange lol fibro fog just makes me stranger lol stay strong n dont let the foggy moments get you down - i tend to end up laughing at myself now but i have had this for quite a few years now amongst other illnesses and my daughter who is 18 has fm too so between us we make a right pair!

    Take care n sending lots of fluffy hugs your way xx

  • Just a question why the author? This may seem silly but do you write or just like books? You dont have to answer was just curious n love the name xx

  • Hi mystique

    Many thanks for your kind words and encouragement. As I have said to everyone else on the forum, 'I sure need a friend about now'. My pain management is sort of satisfactory for the moment. The real issue that is affecting me is my emotional state. I don't feel depressed just really emotional. I used to be a strong person but now I can cry as a result of the silliest little thing! I have read that depression is a part of fybromyalgia but as I say I am not feeling depressed. I suppose if I put a positive slant onto this I could say that I have gained from the experience? I have lost a lot as a result of being ill but I have only just realised of what I have gained by the experience. Maybe this will make me a better person as a result of all the new sensations that I will feel? As a result I may have a greater insight and empathy into the feelings of those around me.

    I am so sorry to hear that both you and your daughter have the syndrome. I sincerely hope that you are both coping with any difficulties that arise and that you didn't have a difficult time getting diagnosed?

    Anyway. I hope that it is okay for me to contact you this way as I am sure that I will have a myriad of questions about all of this over the coming months?

    Once again, thank you for your hand of friendship - Oh yes! I have been a professional author for nearly 20 years.

    Ken (the author) x

  • Hi ken, bless you, you sound lovely.

    Thankyou it is a strange illness one minute you are up the next down, so what you are feeling is very normal.

    All of us feel that we need someone to talk to at times, this site has been fantastic.

    Of course you can chat either on here or you can inbox me anytime and whenever I get chance to come on here I will reply, if I can help you I will take care mystique xx

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