Feeling trapped and alone

Introduce yourself and find fellow sufferers in your area or who share the same interests.

Moderators: perseus, *Lisa*, FluppyPuffy

Feeling trapped and alone

Postby Celestica » Wed Jun 11, 2014 7:17 pm

Hi there everyone, I'm new here!

I'm 24 years old, male and live in Manchester. I have upcoming blood tests next week, but the anticipation of knowing what exactly is wrong with me is killing me. I am extremely afraid and feel very isolated right now. I live alone with my Dad, who is a hard-faced ex-military type, as you can imagine, I am really struggling to find sympathy here. I have lost a significant amount of weight with anxiety, (I'm already thin), stopped eating and drinking for several days, and my symptoms have increased in severity (as well as new ones developing) all over the course of a week!

I'm looking for a few thoughts and opinions from people who either have FM or have had similar experiences - what exactly do you think I might have? Does this sound like FM, anyone?

I was a very healthy child, no problems at all. When I was in my early teens however (13-15) I noticed that my heart rate began to change during and after exercise. Instead of returning to its normal rate, it would flutter quite quickly in my chest for hours. I noticed that it would return to its normal rate after sleeping. It wasn't exactly uncomfortable, but it was enough for me to notice the change. This was the only symptom I had until I started college some years later.

Fast forward to 2008, I was 18 years old and had just left college. I went through a 6-9 month period of extreme self-neglect. Not sleeping until 4am every night, working long shifts, playing video games 24/7, eating terribly - my Mum warned me that I was burning the candle at both ends. It was during this time that I began to wake up in the mornings feeling that I was 'internally shaking' (I know, it sounds crazy right?). At first it was intermittent, but as more time went by, it became permanent. I now have tremors when doing physical exercise of any kind, internally and externally. The worst symptom by far is my heart symptoms. Coughing, leaning forward, lying on my back, or making any sudden movement can make my heart palpitate. All of these symptoms began, as I said, in this period of extreme neglect of my health. I feel in my heart (no pun intended) that they are intrinsically linked somehow.

As I have grew into my 20's, more symptoms have developed. Muscle stiffness, tension and pain in my back when moving my neck forward, back, or sideways, I have both upper and lower back pain. A chronic sinus problem, nerve pain that feels like stabbing or aching (arms, legs, chest, hands, feet), numbness and tingling in my hands and feet (worse on my right side), muscle twitches, sleeping during the day, decreased attention span, sensitivity to heat, cold, sugar and alcohol, waking up feeling shaky, tremors, night sweats, mood swings, eye pain (my right eye twitches and looks slightly droopy sometimes). My symptoms are definitely made worse by anxiety, exercise and dehydration. My doctor suspected Graves Disease, and I had a blood test in 2010 - all clear. I'm not convinced, as my symptoms have developed a lot since then, hence my new tests next week!

Something tells me that I am either diabetic, or suffer from MS or another horrible progressive disease. I am becoming more and more ill every year. I'm terrified of what I might find out but I can't live in denial any longer, these symptoms are ruining my life. I am 24 but feel like I'm 70. The funny thing is, I have a lot of pain over my body, but I don't really have 'pain points' which I've read about in FM. Pain is also relatively new, I've suffered with tension, stiffness and nerve pain for only a few years. Surely if it was FM, pain would have been the first symptom? This is what concerns me. Does anyone have any ideas? Please help! ((((
Last edited by Celestica on Wed Jun 11, 2014 7:32 pm, edited 1 time in total.
Celestica
UKFM Newbie
 
Posts: 6
Joined: Wed Jun 11, 2014 4:02 pm

Re: Feeling trapped and alone

Postby Lindilou » Wed Jun 11, 2014 7:29 pm

You may well have fibromyalgia or ME (I've both) Your body has suffered years of abuse and now it's paying you back. I hope the blood tests show something then you can 1, relax coz you have a diagnosis and 2, join all of us lot on here. Please take care and I'm afraid I have no idea as to the problems with your dad. Is there anyone else in the family you can talk to ?

:grouphug: :hugs: :grouphug:
Lindilou
 

Re: Feeling trapped and alone

Postby Celestica » Wed Jun 11, 2014 7:46 pm

Thanks for the reply Lindilou, it makes me feel a bit better that someone is even acknowledging what I'm saying! My Dad shakes his head and sighs, as if I'm making the whole thing up! Even my Doctor was very pessimistic! I feel like banging my head on the wall sometimes.

I could speak to my Mum about it, but she isn't well herself. She has very similar symptoms to me, and I'm reluctant to stress her out any more! :lol:
Celestica
UKFM Newbie
 
Posts: 6
Joined: Wed Jun 11, 2014 4:02 pm

Re: Feeling trapped and alone

Postby Ali170 » Wed Jun 11, 2014 8:40 pm

Hi love, doesn't really sound like FM, mine started with all over aches, like the flu, progressed to upper back pain, pains in my upper and lower legs, Now it's all over the place or just in one place. definitely need to get your heart checked out , also diabetes and anaemia . Blood tests should include, imflammation markers, kidney and liver function, thyroid etc. Feel for you, I really do. Don't blame yourself, a lot of us abused our health when we were younger, not always a factor in chronic illnesses. You need to find someone to talk to, a friend, cousin or Aunt ? I hope you get a diagnosis soon. Try to stay calm and deep breathe when you get your palpitations, they could be stress. Good luck love, you're not alone xx
Ali170
UKFM Member
 
Posts: 35
Joined: Mon Jun 09, 2014 9:33 pm

Re: Feeling trapped and alone

Postby FluppyPuffy » Wed Jun 11, 2014 8:56 pm

:cow-wave: :cow-wave: and :welcome: to the forum. I've moved you into here with this being your intro topic as it's a more suitable board than where you had originally posted, so you won't drop down into the deepest and darkest depths of the forum where the dust bunnies dwell.

You'll appreciate that no~one on here can say that you have FM or anything else that shares the similar range of symptoms that you experience. A definite dx needs to come from a suitably qualified healthcare professional such as a GP, Specialist or Consultant.

Whilst what you have described symptoms~wise could be attributed to FM, they could also be related to other conditions such as Rheumatoid Arthritus, MS, and Lupus. There isn't any test currently available here for FM, so to determine what is the cause of what you experience, these other possibilities tend to be investigated by whatever necessary tests, scans etc being run and seeing what the results indicate. It is usually when all other possibilities have been discounted that an FM dx tends to be arrived at. This can be done and made by either your GP, or by referral to a suitable specialist or consultant, such as a Rheumatologist.

When FM starts to show itself, pain isn't necessarily the first symptom to appear. With there being such a diverse range of symptoms and problems associated with the condition, anything can appear in any order and at any time, often mimicking other conditions, which can add even more to the frustrations already felt in trying to get those desperately wanted and needed answers.

Worrying about what could be the cause of symptoms is a natural reaction, but can at times become overwhelming, even all~consuming, and lead to additional problems, along with the worsening of others already experienced, such as what you have been experiencing. You have your first step in place, your upcoming blood tests. Until then, the best thing to try and do is take a step or 2 back and see if you can find ways to try and help yourself relax a little. Distracting yourself with something you enjoy can help, such as listening to something that helps you unwind, or even makes you laugh. You could also try exploring ways that you can help ease the intensity of your symptoms. There are many suggestions on the Tips/Help on Coping board that members have found helpful, so that might be a place to start. Finding someone that you can talk to about your concerns could also be beneficial and help you feel a little more settled about things.

There is a lot of other info and advice on here, which could be of help if you want to broach the possibility of an FM dx with your GP. You could use some of the info about the condition from the main site, as well as your own symptoms to show where there are similarities/parallels that could indicate FM.
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Feeling trapped and alone

Postby Celestica » Wed Jun 11, 2014 10:08 pm

Thank you so much for your warm welcome and replies, much appreciated!

You're absolutely right FluppyPuffy, keeping myself occupied is probably the most important thing right now. I've watched a few movies today and tried to keep busy, but the thought is always there in my mind, you know?

I've managed to arrange blood tests for tomorrow at a local clinic instead.
Celestica
UKFM Newbie
 
Posts: 6
Joined: Wed Jun 11, 2014 4:02 pm

Re: Feeling trapped and alone

Postby Celestica » Wed Jun 11, 2014 10:34 pm

Ali170, I also appreciate your reply!

I think I'm going to have to break the silence on this with my Mum, depending on the results, this is driving me nuts! I have discussed it with my girlfriend once. She is Russian and I only see her every 3 months for 1 month at a time (hopefully this changes next year, quite distressing). I'm reluctant to talk about it with her further as I don't want to upset her, and she's often lost in translation.

Like my Dad, most of my friends are either army or ex-army, they aren't the most empathetic guys in the world but they do their best! I might bring it up with my best friend over the weekend, thanks for the advice. I'll keep you updated. :)
Celestica
UKFM Newbie
 
Posts: 6
Joined: Wed Jun 11, 2014 4:02 pm

Re: Feeling trapped and alone

Postby FluppyPuffy » Wed Jun 11, 2014 11:33 pm

Have you mentioned to your GP about your mum also experiencing a number of the symptoms that you have??? Just a thought in case there might be a possible hereditary element involved :shock: :shock: :shock:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

If your dog doesn't like someone, then you probably shouldn't either
User avatar
FluppyPuffy
SITE ADMIN
 
Posts: 12719
Joined: Mon Jun 08, 2009 11:25 am
Location: Living Life On The Edge.......Of The Norty Step!!!

Re: Feeling trapped and alone

Postby migrembe » Thu Jun 12, 2014 4:50 pm

It doesn't sound like FM and a blood test won't tell you either way.

I think you need to book a double appointment at your GP's, write down all the symptoms and be open and honest with them and tell them everything you feel.
migrembe
UKFM Member
 
Posts: 429
Joined: Fri Feb 24, 2012 8:23 am

Re: Feeling trapped and alone

Postby whoami » Thu Jun 12, 2014 6:49 pm

It is important to disclose all your symptoms and any family illness that there might be. Mention your mum even though he can't discuss her file with you.

There are many blood tests taken in order to diagnose fibro. The tests are to rule out other illnesses that could be the cause of your symptoms.

Fibro does not always present itself with pain right away. Symptoms vary from one person to the next.
Nobody here can say if you have fibro or not. You need your Dr to either confirm it or send you to see someone else.

It is so easy to isolate ourselves. Depression comes easily to fibro patients but there are things, meds, therapy etc that can help.

Please try to relax, don't try to diagnose yourself or ask others to, this will only confuse you even more. Talk to your mum. You may have something in common.

I really feel for you. I have dealt with this for over 25 years now and all I can say is that if it is fibro, it can feel better. It will not go away, there is no cure. If it is fibro, you can get help learning how to live with this illness. Through, meds, therapy and other treatments. Fibro is not a death sentence, it will not kill you. If it is fibro, you can live an active, productive and very loving life. It will be different, you will learn to do things differently but you will have a life.

Try to relax, see your Dr and then take things from there. Don't look for things you cannot diagnose yourself. X
[i][b]

Expect the worst in life you won't be disapointed and you'll be prepared!
whoami
UKFM Regular
 
Posts: 1537
Joined: Wed Jan 23, 2013 9:22 pm
Location: Ontario, Canada

Re: Feeling trapped and alone

Postby Celestica » Sat Jun 14, 2014 8:08 pm

Hello everyone ))

I had my blood tests yesterday, just waiting for the results now. I've tried to remain proactive but ignoring these symptoms completely isn't easy.

I've actually realised a few things since posting here that I've mentioned to my GP. Firstly, even though I was experiencing some minor numbness in my toes/fingers a month or so back, it only became a big problem last week. I recently lost my job and have become really depressed. I stopped eating and drinking for a long time, lost a lot of weight, and that's when the numbness really kicked off. I started to eat more over the past few days and the numbness went away except for in the mornings. I decided to do an experiment today and not eat, and the numbness came back (I've got pins and needles, weakness in both hands right now). I think that the numbness could be due to some kind of vitamin deficiency?

I woke up this morning with pins and needles/numbness in my arms, legs, hands and feet, as I have done for several days. I noticed that it only takes about 10 seconds for the numbness to go away. When I lay down, I could literally feel & hear blood returning to my arms. Seems to be some kind of circulation problem, but like I said, this symptom only started a few days ago, when I stopped eating. I feel they're connected somehow, and wasn't surprised that a lot of my symptoms can be found under vitamin D and B12 deficiency, including ptosis, numbness/pins & needles, poor circulation. Just eagerly awaiting the blood tests...
Celestica
UKFM Newbie
 
Posts: 6
Joined: Wed Jun 11, 2014 4:02 pm

Re: Feeling trapped and alone

Postby MichelleJ » Mon Jun 16, 2014 9:57 pm

Hi celestica and welcome. Do you have your results yet? Not gonna add to what the others have said as I would just be repeating it all but wanted to say please eat. Whatever you have its vital you eat and drink. If you aren't then you will have really low blood sugar which can cause some of these symptoms your describing and the fact you say it got worse when you stopped and improved when you started again suggests this may be the case. I'm not saying its all caused by that but certainly some of your symptoms could well be and you could be making others worse. Try and eat a healthy balanced diet and make sure you drink plenty. Your body cannot help itself without the fuel it needs. Then of course there are the deficiencies you mention that lack of food will be causing. I know that sometimes it's not easy to eat, I've been there myself and really struggled for years with food. But I presented with some of the symptoms you describe years ago when I barely ate a thing (600 calories a day on average) and it turned out to be very low blood sugar and deficiency and when I started eating properly they went away. Even had heart symptoms with it.

What I'm trying to say is get your diet sorted and force yourself to eat and drink a regular healthy diet and at least then you will be strong enough and your body well enough to manage whatever condition you are diagnosed with. If like was the case for me you feel unable to do this alone then please tell your g.p that you are having these issues with food as they can help you. That was how I had to do it, my g.p made me accountable to them. I was never diagnosed as anorexic but this went on since childhood till my mid twenties and looking back now and looking at photos I think I'd be naive to say I wasn't or at the very least was bordering on it.

Please keep us posted with your results and how you are getting on. Here's hoping for a quick diagnosis for you :)
Dx with fibromyalgia m.e/Cfs and asthma
MichelleJ
UKFM Member
 
Posts: 350
Joined: Sun Mar 27, 2011 4:27 pm

Re: Feeling trapped and alone

Postby Celestica » Fri Jun 27, 2014 7:59 pm

Hello everyone,

It's been a while since I posted here. The last few weeks have made up what has been probably the lowest point in my life. I've had every test under the sun - MRI, ECG, blood work, you name it! Both of my arms are black and blue. On Tuesday I was finally diagnosed with an arrhythmia and postural orthostatic tachycardia syndrome (POTS).

I got into a heated discussion with my GP on Monday. He was utterly convinced that this was all in my head! He even accused me of making some of my symptoms up just so I could get a referral. He also told me with a rather smug grin on his face that heart symptoms triggered by posture didn't exist. I told him as politely as I could that quite frankly, I didn't believe a word of it and that he was completely wrong. I've experienced them for more than a decade! I felt absolutely belittled and asked him if he was calling me a liar, to which he just replied 'anxiety'. This battle went on for about 15 minutes before he reluctantly, finally caved in and referred me to the TIA department. After 6 years of pushing these people, I guess they just got sick of me asking.

During my MRI scan at the hospital, the posture I was in caused a huge wave of heart symptoms, as it has done in the past... I could feel them gradually worsening the longer I was stuck in the machine. I'm not claustrophobic in the least, so I knew it wasn't a panic attack. As I said, I knew it was related to my posture - so was hoping I'd have a bad attack, that way, the staff could see for themselves that I wasn't full of it. Unfortunately, I definitely got what I wished for... When I got out of the machine and sat upright, I had an almighty thump in my chest, followed by intense pins and needles & numbness in both hands, shallow breathing, light headedness, vomiting and a rapid heart rate (about 180 BPM). I nearly blacked out and was absolutely petrified, I felt for sure that I was going to die there and then. Another almighty thump, and my heart rate reset itself. The symptoms were only alleviated by changing my posture and lying flat on my stomach. I was sent to a cardiologist the same day, but had to wait around for another 2-3 hours. Had further tests - everything from ECG's, to testing my reflexes, to being raised/lowered on a table to check my pulse and blood pressure. After years of waiting and suffering with this damn condition, I finally have the answer I've been looking for. This whole experience has made me want to change my GP surgery asap and I intend to do just that next month.
Celestica
UKFM Newbie
 
Posts: 6
Joined: Wed Jun 11, 2014 4:02 pm

Re: Feeling trapped and alone

Postby Lindilou » Fri Jun 27, 2014 8:55 pm

I don't know what to say Celestica other than your gp is disgusting. :hugs:
Lindilou
 

Re: Feeling trapped and alone

Postby ..:: lisa ::.. » Mon Jul 07, 2014 11:36 am

Hi, I see this hasn't been added to in a couple weeks.
I just wanted to say that I understand what you're going through. Being treated badly by a medical professional is just wrong on many levels!!
My first neurologist offered me speech and language, physio, occupational therapy and a psychologist but ONLY if I accepted his diagnosis of "it's all in your head" after disputing this he then went on to tell me that "I am not wasting any more time on this, I've got other patients to see"

POTS is something I've brought up with my own gp, he laughed and said he only has one patient with it! He did put me on beta blockers but no tilt table test.

I hope you are coping and this experience hasn't caused your symptoms to worsen.
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
..:: lisa ::..
UKFM Member
 
Posts: 89
Joined: Sun Jul 06, 2014 6:24 pm


Return to Where to Say Hello

Who is online

Users browsing this forum: No registered users and 2 guests

cron