Help! Fibro so bad I am sleeping in toilets on lunchbreak

All your fibromyalgia experiences, questions and answers.

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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby LouLou » Wed May 22, 2013 9:36 am

Hi anonymouse

Have sent you a PM as I didn't want to take over Coco's thread, but really enjoying our discussions - hope that's ok.

Lou
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby cocobella » Wed May 22, 2013 10:36 pm

Haha!! It is okay you can take over my post:-P. Well I found out yesterday that I have a severely underactive thyroid!!!!! Can't and can believe it lol. Bloods were tested back in February for thyroid and all came back normal, despite me having a goitre and strong family history of family disorders. Docs never kept an eye on it and kept saying it was a red herring with regards to what was wrong with me and my symptoms. Turns out that it was SO low, which completely explains all my symptoms. I have ended up signed off again this week from work due to my symptoms being so bad, I then asked my GP if he thinks I still have fibro and he said yes but was still a bit unsure. WTF??? Tempted to put in a big complaint for them being so dismissive of my thyroid in the first place and all the time i have had to take off work. I honestly felt as though nobody was believing how fatigued I was, now I have proof in black and white!! lol
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby anonymouse » Thu May 23, 2013 3:10 am

Cocobella, I am so pleased for you in that you finally have an answer to match your symptoms and it is something that is probably treatable!

In the future I wouldn't be surprised to see Fibromyalgia as a condition disappear as medical knowledge get better and better. I'm almost convinced that it is a collection of different unknown conditions that result in similar symptoms.

Regarding your diagnosis I certainly see how you feel agreved, I'm not sure if the negative blood test in the past would be enough to put most GP's off the scent or not. Another possibility is a lab error I suppose.

I wouldn't worry about the Fibro at the moment as I don't think your going to get an answer on that one until your thyroid problem is under control. Things like this are often cited as a possible reason for Fibro starting, by things like this I mean a severe illness like a bad flu strain, a serious infection or similar. How accurate that is can be anyone's guess. I think there is a good chance that your symptoms are thyroid based so concentrate on that, make sure your managed properly. If you have any problems get a second opinion, if you need any more info let me know as I think I have a friend with the same and she has not got Fibro. If possible try to get a specialist on the case to ensure the best treatment etcetera.

Sorry to hear you have been signed off, although its probably for the best. If your suffering as much as you are they would be a quite a risk of making an extreme cock up at work, like taking the servers down for the trust or something daft. You may then find the understanding side of your boss disappears, at least when your off your not risking it. If your boss is still being good about it make sure you tell him/her how happy you are about your diagnosis and that it finally means they can start treating you so you can be far more productive etc etc.

I bet it feels great to have validation, like you say something in black and white, I can't wait for the day there is a black and white test for Fibro and for people to finally realise we have been truthful about the hell we suffer almost every day. I'm so glad I know others with the condition.

Anyway I must get off as I need to sleep and I failed epicly at that one last night and I really must fight it now. LouLou I have sent a reply PM however it is showing in my outbox and not my sent so I am a little concerned it hasn't sent properly, otherwise we will have to take over Cocobella's post ;-) let me know if you get it

Night....... Or "morning" all!

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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby loubylou17 » Sat May 25, 2013 5:30 pm

I was found to be suffering from hyperparathyroidism in 2006, I had surgery in 2007 to remove one of the glands.

Following surgery my levels of calcium and parathriod quickly returned to normal my symptoms eased slightly so it was then decided that the hyperparathyroidism was responsible for aggravating some of the fibro symptoms.

I have had annual blood tests since my surgery and last year my hyperparathyroidism returned and last week I had another two glands removed, I am now hoping that I have some improvement to my fibro symptoms as I am currently going through my worst ever flare up.

Have you seen an endocrinologist? If not push for a referral to an endocrinologist.
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby cocobella » Sun Jun 16, 2013 6:27 pm

Hi All. Just thought I would let you all know I have been diagnosed with follicular thyroid cancer. Found out this week, Huge shock as I am only 26 but it finally explains all my terrible symptoms. NOTHING was helping my fibromyalgia pain. I was on the highest dose of gabapentin, then pregablin etc which are supposed to be excellent drugs for this. The only thing that helps is STRONG opiates. Went for my 2nd thyroid biopsy and boom found out on Thursday!!! For the past 2 years I have been suffering with horrendous symptoms and kept going to my GP - nearly every week who just dismissed me and kept saying it was M.E. Then finally got diagnosed with fibromyalgia in February. However, my endocrinologist has actually said he doesn't think I even have fibro, and he thinks it has been my thyroid all along. He is in the hope that once I get my thyroidectomy and radioiodine therapy that my pain and fatigue will disappear. Wish I could say something positive but I suppose I just feel drained and a bit pi**ed off with my GP!! lol xxx
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby anonymouse » Sun Jun 16, 2013 7:16 pm

Oh my goodness! I had just written a reply and lost it on my ipad because a knocked the wrong bit of the screen so I will try and remember what I said:

This is yet another example of Doctors being blinded by a Diagnosis of "Fibromyalgia" & "M.E" I am so angry I can't even begin to know how you feel. Doctors think that Fibromyalgia pain can only be mild and that if you had a condition like cancer then your pain would be much more and much much different. This simply isn't true and the pain you can be in is very similar indeed, Fibro pain can be huge and other conditions can be missed because you are going through living hell.

I really do hope for the day to come where "Fibromyalgia" becomes a symptom NOT a diagnosis. Can you remind me who diagnosed you bella? I wonder if a legal case may be appropriate or not, just a thought but don't compromise your health to fight one. I have a particular symptom that I have never heard of anyone else having that doctors attribute to Fibro, just before they throw me out of a consultation as no one understands why or how it can occur and they don't want it on their workload, its easier to ask me to leave. Also they will only consider things like MRI & CT scans if they are almost certain they will find something, yet they have the nerve to call these machines diagnostic equipment! If you have a condition the NHS pathways includes your usually ok but as soon as you have something they don't include you might as well be in the dark ages.
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby shazq » Sun Jun 16, 2013 7:33 pm

cocobella wrote:Hi All. Just thought I would let you all know I have been diagnosed with follicular thyroid cancer. Found out this week, Huge shock as I am only 26 but it finally explains all my terrible symptoms. NOTHING was helping my fibromyalgia pain. I was on the highest dose of gabapentin, then pregablin etc which are supposed to be excellent drugs for this. The only thing that helps is STRONG opiates. Went for my 2nd thyroid biopsy and boom found out on Thursday!!! For the past 2 years I have been suffering with horrendous symptoms and kept going to my GP - nearly every week who just dismissed me and kept saying it was M.E. Then finally got diagnosed with fibromyalgia in February. However, my endocrinologist has actually said he doesn't think I even have fibro, and he thinks it has been my thyroid all along. He is in the hope that once I get my thyroidectomy and radioiodine therapy that my pain and fatigue will disappear. Wish I could say something positive but I suppose I just feel drained and a bit pi**ed off with my GP!! lol xxx


Sorry to hear you have cancer, :hugs: it makes me so angry that doctors keep putting everything down to one diagnoses, its like they try to palm you off. Its lucky you have a endocrinologist to look after you. Good luck with your op. :flowers:
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby FluppyPuffy » Sun Jun 16, 2013 9:44 pm

Sorry to hear how things have turned out :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: I think being peed off with your GP is just the start of things :waiting: :waiting: :waiting: I wouldn't be surprised if you're soon baying for blood and demanding their head be served to you on a silver salver :scream-1: :scream-1: :scream-1: :too-upset: :too-upset: :too-upset: :pull-hair: :pull-hair: :pull-hair: :face-slap: :face-slap: :face-slap:

I'm glad you've finally got a definite cause for how you have been feeling tho, and I hope that once your op is done and treatments start, things will start to turn around and become much better for you :fingerscrossed: :fingerscrossed: :fingerscrossed: :flowers: :flowers: :flowers: :blowkiss: :blowkiss: :blowkiss:
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby anonymouse » Sun Jun 16, 2013 10:18 pm

I must admit if any thread needed those animated icons of annoyance it would be this one! Very appropriate FluppyPuffy, especially the one that looks like her slapping her GP round the face as everyone who reads this thread would want to do the same and as for Bella she should be entitled to give him/her a slap at the very least!
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby LouLou » Mon Jun 17, 2013 9:56 am

Oh Coco I am so so sorry about your recent diagnosis.

I am just stumped for words at the moment, plus I'm a bit foggy today so can't think very clearly but I just wanted to post you my love and thoughts at this tough time.

I'll be back and post a bit more when I can. Take Care and I'm sending you lots of gentle hugs
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby Picklepudding » Mon Jun 17, 2013 10:06 am

Oh goodness, I'm so sorry that you have cancer but am very pleased that you've finally got the correct diagnosis and that you can hopefully now get the correct treatment.

I'm hoping that all goes well for you...I've had a partial thyroidectomy but I was lucky as my lump wasn't cancerous. I hope that the treatment is speedy and that you are soon on the road to recovery xxx
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby cocobella » Tue Jun 18, 2013 7:06 pm

Thank you so much everyone! and Fluppy - I needed those emoticons it made me laugh!! hehe.

I will still be using this forum as it has helped me a lot. I think you are all so correct in what you are saying about the GP's just fobbing us off. Personally, I feel my GP has been a nightmare. He constantly complains of being too busy, and evidently it has put my life (and probably others) at risk as he just doesn't have the time to see us. I was phoneing the practice nearly every week and asking for appointments as my symptoms have just been a nightmare.

I was diagnosed back in February 2013 by a consultant rheumatologist. She even said herself it was a diagnosis of exclusion as everything else had been ruled out. When saying everything else I mean arthritis, lupus, rheumatoid arthritis as obviously that is what the rheumys specialise in.

I was referred to endocrinology in September last year due to the goitre in my neck. It has doubled in size in the past 6 months and I went for my second biopsy 3 weeks ago and found out last week the sinister outcome. In a way I am relieved as I thought it was all in my head. Not only that, it proves once again that fibromyalgia rarely exists alone. I agree, that it should be classed as a symptom and not a diagnosis.

Work have now backed right off, as they were beginning the whole HR route and were basically wanting rid of me. Now that has changed as they know my diagnosis is 'genuine'. This was my manager's words. Erm, hello???? my diagnosis and complaints were genuine before I found out about the thyroid. This also proves again, that there are still people who do not really believe fibromyalgia is real or is a condition/symptom. My union are also involved now and have been ranting and raving lol.

As I am only in my 20s I won't lie....I'm scared lol. I have lost friends to this illness, had horrible treatment from managers and colleagues and even been accused from my family of being lazy over the past 2 years. I could probably write a book about everything that has happened. Now, I have pathological proof that something is seriously wrong. The whole thing has DRAINED me and I still have loads of this journey left to go.

I was put on strong painkillers and pretty much pumped full of anything the doc could find to shut me up. When all along, the main cause was being missed. :(

I think on all the NHS choice pages where they have symptoms of cancer, fibromyalgia should be put in there. So many people who have or have had cancer seem to have fibromyalgia and chronic pain.

Anyway, thank you everyone and I would like to keep in touch with you all during this experience.
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby FluppyPuffy » Tue Jun 18, 2013 8:34 pm

Glad my use of our little collection of smilies helped make you :lol: :lol: :lol: :lol: :lol: :lol: :lol: And it's nice to know that being part of our family has helped you and made you want to stay with us :grouphug: :grouphug: :grouphug: :grouphug: We may not be as able to help you with wonderings and thoughts about your condition, as altho there are members who are cancer survivors, posts and topics seem to be somewhat small in number (I did a quick search to see if there might be something that could be useful to you) you know there are always plenty of :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :hugs: :hugs: :hugs: :hugs: :hugs: and [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] [chocolate] as well as :teddy-bear: :teddy-bear: :teddy-bear: to hug for those times when things seem to be pulling you in a darker direction, or you just need to get some of those pent~up frustrations out.

I'm not surprised that you're scared, even tho I'm not quite as young as you, I'd be bricking it as well :yikes: :yikes: :yikes: Even with the best prognosis on your side, it's inevitable that you're going to wonder about what could happen if things don't go quite the right way :shock: :shock: :shock: :shock:

It's good that your employer is now acting in a more suitable manner, altho it's terrible that they are seemingly happy to accept that cancer is a genuine dx and condition, yet FM isn't in their eyes. The Equalities Act 2010 treats FM in the same way as other conditions and disabilities, so maybe they need :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: with a copy of it as well as a bit more :face-slap: :face-slap: :face-slap: :face-slap: :face-slap: :face-slap: :face-slap: :face-slap: :face-slap: :face-slap: :face-slap: to make them realise how out of touch and bigoted such an attitude is :waiting: :waiting: :waiting: :waiting: :waiting:
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby cocobella » Tue Jun 18, 2013 10:53 pm

Hahaha Fluppy I love your posts! :-) Love the teddies!!:-).

Yep it is a scary thing. Although, thyroid cancer is apparently one of the most treatable ones and has an excellent prognosis. So I do feel positive about it. I just cannot wait until the damn thing is out!! I hope I go back to the 'old' me who was happy, mad and energetic. The exhaustion is awful just now too so I am praying that will get better.

I think, fibromyalgia or not??? I definitely have the classic symptoms of it, I suffer in pain daily, just like all you guys. My 'pressure points' are very painful when pressed etc. So basically I still have fibro in my eyes haha!! And still have the same symptoms as you all do haha. At the moment dihydrocodiene along with pregablin seems to be the best meds for me and really takes the edge off the bone/joint pain. Tens machine is good too, however as my pain is widespread I can usually only put the tens on my back. Still using my walking stick too for my 'bad' leg as it takes the pressure off it a bit, but it hurts my hand with the grip.

My endocrinologist cannot tell if my fibro pain and symptoms will go when the thyroid is out, however he did say the hypothyroid symptoms will go. (which are very similar to fibro). So 'YAYY' to eyebrows growing back and moon face deflating!!! and maybe lose a few pounds :crazy: hahaha. Not that weight and appearance is my priority just now :-p.

This last paragraph is just a general rant at society so if you have fibro fog, do not continue haha -

I am going to go back to work for the distraction, however I do not know if I will manage or not but I can only try. I think the worst part about all this is that a lot of people judge me because I am young and I look well. When I have my 'face' on - thanks to estee lauder maximum coverage foundation which covers up heavy black bags under the eyes :sleep: and pasty pale skin. I think people just assume, oh she looks well, yes she walks with a limp but she looks ok. Most people also assume that people in their 20s are fit as fiddles - and some of us AREN'T haha!!!! I also work for the NHS, and there is such a horrible culture of blame/gossip. So if you are young and off sick, straight away the assumption is you are taking the pi**!!!! lol. You hear people complaining about "So and so is off AGAIN, she seemed fine when I bumped into her in Tescos". I hate that type of judgemental attitude, especially in the health service. People can look great, but inside they could be really ill. There is also the attitude of "Just get on with it". I tried that and ran myself into the ground and was basically found unconscious at my desk and had been sleeping in the toilets (haha what this thread was actually based on). Some people just do not understand ........sigh.....
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Re: Help! Fibro so bad I am sleeping in toilets on lunchbrea

Postby denys » Tue Jun 18, 2013 11:23 pm

So sorry to hear about your diagnosis but glad you are feeling quite positive I can only echo other peoples comments, if I were you I would definitely put in a complaint about your doctor. His treatment of you is absolutely appalling, we have just gone through a situation of a GP ignoring a family members concerns and then them being proven right and we put in a complaint immediately (to the practice manager) and it has been taken seriously even though it was only very minor compared to your situation.

If you dont bring it to the attention of others then nothing is ever done and it will continue to happen, at least your GP should be reprimanded and possibly sent for extra training. Possibly you may be to exhausted to take the task on at the moment with everything else you are facing, but possibly a close friend or family member could help you by preparing a letter maybe :?: :?: :?: :?: :?:

Anyway :goodluck1: with the treatment and as Flup said we are glad you want to stay with us and we'll be by your side throughout :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs:
Denys

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