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The UKFibromyalgia Forums • View topic - Hello! newly diagnosed but unsure



Hello! newly diagnosed but unsure

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

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Hello! newly diagnosed but unsure

Postby moegreen » Mon Mar 04, 2013 2:07 am

Hello everyone.

I have been looking around on this site for some time now and decided to finally write my first post.

I have been recently diagnosed with 'secondary fibromyalgia' by a pain specialist other doctors refuse to acknowledge that there is anything wrong with me. I just don't trust the medical community and sure that people on here will have better insight. Hopefully some of you can give me your opinions on weather I really do have fibro. My story is long and to be honest Im worried I won't get the response Im hoping for.

I've spent the last 15 months reading about treatments, vitamins, supplements and perhaps I can give a bit of advice as well. I learned about test results and what they could mean.

anyway... nice to meet you all. Stay strong!
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Re: Hello! newly diagnosed but unsure

Postby *Lisa* » Mon Mar 04, 2013 1:33 pm

Hi and welcome, if they say fibro is secondary it will mean you have another illness that has brought on the fibro or fibro is a comman associated condition along side it.

Test results for fibro are nil. Everything will show up completely fine ulness another illness/condition or problem is present.

i hope you can get the answers your looking for :wave:
As a Public Moderator & Admin 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...Lisa
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Re: Hello! newly diagnosed but unsure

Postby FluppyPuffy » Mon Mar 04, 2013 1:56 pm

:welcome: to the forum moe :cow-wave: :cow-wave: :cow-wave:

I hope you'll appreciate that we can't say if the FM dx you've been given is right or wrong, all we can really do is comment on symptoms that you tell us about and how they relate to what we have learnt and experienced ourselves about FM. If you're unsure about your dx, then you could always ask about a second opinion. With you seeing people that have been dismissive of the condition, your lack of trust where the medical fraternity is concerned is understandable, however there are the decent ones who believe in the condition and will work with their patients to try and find the right recipe for the individual to make things a bit more bearable and manageable.

What is it that you're worried about when it comes to responses you could receive to your story?? As I said, all we can really do is comment on what you post and maybe offer some advice or suggestions based on what we have found out ourselves. We're nice and friendly and try to offer everyone who joins us, regardless of where they are along with their FM quest, the same support and help. Lots of us have quite long stories that have lead to us being dx'd with the condition that has ultimately led us to here, so you're in good company.

Maybe start with having a look and a read around the forum and see how many other members have gone thru a similar experience to yours, share similar symptoms etc, there usually tends to be someone not too far away who will reply to something you want to know about :cow-wave: :cow-wave: :cow-wave:


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Re: Hello! newly diagnosed but unsure

Postby shazq » Mon Mar 04, 2013 6:45 pm

:welcome: to the forum moegreen :wave:
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Re: Hello! newly diagnosed but unsure

Postby moegreen » Tue Mar 05, 2013 9:01 pm

Hello Lisa, Fluffy Puffy, and Shaz

Thank you for your replies. It means a lot.

I do not expect a diagnoses on here but surely talking to people with a similar condition might help get me on the right track. I should share my story and see what you guys think. Will try to make it as short as possible.

I am a 29yr male. I was super active and regularly playing sports until about 15 months ago, I injured my left shoulder. It was a grade 5 shoulder separation where the ligaments that attach the collar bone to the acj completely tore off. had surgery which completely failed. I was down, stressed out and weak. I was in the middle of a masters program and decided to wait a few months to have revision surgery.

In these months, I started to loose strength. My shoulder was in really bad shape, it started clicking and cracking. Soon after my right shoulder started to really hurt and my lower back became unbearably painful and inflamed. I started to run around seeing doctors and doing scans. Eventually I was told it was a cyst in my lower back which after a few weeks of antibiotics disapeared. I then investigated my right shoulder and rightly so was diagnosed with impingement. A cortisone shot relieved the pain for a few weeks. But my knees and neck would crack but no pain. In Aug of last year I finally had my revision surgery. But 2 weeks into my 6 week sling recovery the cracking became worse. Pain in hips and knees to the point I was limping. Anxiety, stress, and frustration kicked in. My vision became extremely blurred under bright lights. I went to see my doc who ran tests for RA. I came out clear. Then went to see a rhuemy who said my vitamin D was severely low (undetectable) i was relieved that it was just a vitamin deficiency. I felt a dramatic improvement after an injection. Even my eyes got better. My knee felt better I could walk on it.

A week or 2 later, I started to feel fatigue, anxiety and pain in joints as well as stifness. My SC joint started to get loose and was so painful. I feel sick writing about it. Every movement I made was agonizing. Went back to my rheumy who said my vit D was still very low and gave me another shot. But a week later I wasnt better and again started this cycle of meeting different doctors who had nothing to say but vitamin D defiency and that it takes time. I ran more scans but nothing showed except inflammation in the SC joint. This became so severe I had to have a cortisone shot. My docs at this stage convinced me that there was nothing to worry about. I traveled home to be with family. In the months that passed I did feel better. I slowly started to go out and socialize but my wrists were weak and cracked. And one day i lifted my leg up and my hip poped. It was so painful again making me bed bound for several weeks. A stressful night made my wrists worse. My right shoulder was a mess. Again I started to meet doctors. One rhuemy was convinced I had fibro and insisted I start anti depressants. Instead I ran more specialized tests with another doc. Stress hormones were up the wall. Cortisol was unconsistant etc. I had a slightly high TSH as well. my estrogen was also very high. EPA ratio very high etc. I started taking a lot of supplements , vitamins, and pregablin. I was getting better but stress made things worse again for me. I struggle to do things as my SC joint is unstable. The surgery also has not worked. It is painful, the pain extends to my arms and neck like its burning.

I have to say I am better today compared to the few months after surgery where i was bed bound and was barely able to move. I am still refusing to take any anti depressants. But I am willing to try other things. i read about a doctor using ketotifen with good results. Anyone here tried this?

your replies are much appreciated.
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Re: Hello! newly diagnosed but unsure

Postby FluppyPuffy » Tue Mar 05, 2013 10:37 pm

Hopefully being able to share experiences and ask questions with us on here will be helpful to you. The thing about the dx and it being the right one for you is something we find ourselves now having to mention due to the number of people who have expected us to give them an absolute and definitive answer and even dx about their condition, even when we have explained that such a thing isn't possible online, esp as non of us on here are qualified to make any sort of dx, clinical decision etc.

A lot of what you have described symptom~wise is very similar to what has been experienced by lots of different people on here. Also, your previous level of activity ties in with another similarity as it's not unusual for FMers to have been active, busy types of people before they were affected by the condition. Experiencing physical trauma is also another factor that can be linked to things, in my case I was involved in an RTA that left me with with a sublux and fracture at C6 that resulted in a fusion, spending several weeks on skull traction and several more months wearing a number of collars, each with a reduction in their level of rigidity as things healed and strengthened. Add in the pressure/stress related to your studying and.......well..... :welcome: to the FibroFamily :cow-wave: :cow-wave: :cow-wave:

To start finding your way to your your right track, having a look and a read across the boards may be something to consider doing :-? :-? :-? As well as helping you find your way around, seeing how others have started to move towards their right path to living with their FM, as well as all the other info, advice and suggestions you'll find on here, it could help you start off on those first steps which can quite often be a bit on the :yikes: :yikes: :yikes: :yikes: :yikes: :yikes: side to begin with :wave: :wave: :wave: :wave:


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Re: Hello! newly diagnosed but unsure

Postby moegreen » Wed Mar 06, 2013 9:00 pm

Hi Fluffy puppy.

Thanks for your reply. Sorry to hear about your difficult experience. I know what it feels like.

Glad to be on the forum and looking forward to interacting with more members.

:-D
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Re: Hello! newly diagnosed but unsure

Postby hooplykim » Thu Mar 07, 2013 1:20 am

That is almost exactly how my FMS started, I injured my shoulder at work, it was about 5 years ago, my joint just split and I had a very unsuccessful operation and then I started getting pain gradually everywhere especially my knees and other shoulder, it was only in September last year that I was finally given the diagnosis of fibromyalgia

I am still trying to find the right meds that will work there are good days and bad, the hardest thing was how active I was before but there s nothing to say I won't be able to be a bit more active in the future. The good thing is that everyone here experiences exactly the same thing, some have different symptoms but it all bios down to the same thing and its sooooo refreshing to be able to say anything no matter how daft it might sound, and for someone to turn round and say, yup, that happens to me too. You will find some truly inspiring posts on here and a lot of fun too!

Stay well
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Re: Hello! newly diagnosed but unsure

Postby moegreen » Fri Mar 08, 2013 4:00 am

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Re: Hello! newly diagnosed but unsure

Postby hooplykim » Fri Mar 08, 2013 3:21 pm

hiya moegreen

female and 34 now, i was 29 when i first hurt my shoulder. i know what you mean about the op ,as, in addition to my fibromyalgia, i still have the ongoing problem with my shoulder from my initial injury. my operation was unsuccesful, oh yeah the surgeon managed to stitch my joint back together, but i was not able to heal as well. when the fibro hit, i was not able to do the exercises required to get my joint moving again so they have discovered that the scar tissue has sort of glued my joint together so that arm has a lot of limited movement, they offered another op but at the moment i do not see how it will help as it will just build up with scar tissue again, i do believe though that in the future it will be a possibility ((( its maybe worth pointing out that , just like my fibro, it took a 2 years to finally get my op, so by the time i had my op the fibromyalgia was already there, it appeared about 6 months after my injury, but i did not give much thought as i was just concentrating on my shoulder, so it took me maybe 4 and a half years to finally know what was up but i still reckon i am one of the lucky ones as some people have waited sooooo much longer!)))))

you sound so frustrated about not working out, i used to go to the gym, kickbox and do yoga and i was also a tattooist and at first i was so upset at not being able to do these things, i can hardly hold a pen some days sp there is no hope of tattooing and yes, the stress of not being able to do these things actually makes the pain worse

i will admit to being my own worst enemy, i am very stubborn and the doctor has told me to slow down and not worry about the things i cant do, but be glad for the things that i can. its taking a while but i am getting there and you really do have to listen to your body, but my GP has told me that gentle exercise does actually help with dealing with the pain, she recommended i continue with my yoga, but very very slowly and carefully, just a few minutes a day to start with and then build up, so its not quite as active as before, well in fact its nowhere near but its got to be a start eh? i know that once i find the right meds for me and a mixture of exercise, i will be able to do a lot more things again

I think you need a good sit down with a GP to discuss all of this and maybe write down your symptoms even ones you dont think are relevant, and get a proper diagnosis and then you can plan a way forward, and you might find that like myself, dealing with the fibromyalgia symptoms first before you have another op might be the best way, there is a great post on here somewhere called stages of grief or something and its really helpful, as somedays you will be stressed and other days angry, it is so normal but also not good for your pain. the thing that really gets me is my tattooing i loved it and of course ink and needles only have a limited shelf life so it all went out of date and i had to get rid of the lot! that was a very angry/sad moment

as for the bloods yes there have been underlying issues as my GP has done several tests, as i am always so so tired and lethargic, the coeliac one came back ok so i am not allergic to gluten as that can make symptoms worse of allergic, but my vitamin b12 and iron came back very low, so i was put on iron tablets and i am getting b12 injections. Gp thought i was a vegetarian as the lack of b12 is usually from not eating meat, but i always eat meat, its the IBS thats associated with fibro that has stopped me getting the nutrients from food

but as my doctor said to me last week, if we combat one little symptom at a time then we will gradually get you feeling back to your old self and i totally agree and i really think the same will be for you, even though it does not feel like it just now, but i really think you need a long chat with a good, fibro friendly GP

take care and stay well
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Re: Hello! newly diagnosed but unsure

Postby moegreen » Fri Mar 08, 2013 10:50 pm

Hi Hooply,

Your reply is very encouraging. I still have hope of completely overcoming what is happening to me.

The worse thing for me is not being able to workout... it really really gets to me, especially that many of my friends are like that too so hanging out with them can make me sad as all they talk about is there long runs and cycling weekends and hanging out after the gym. And when they ask me to tag along I kind of make an excuse as they still dont understand whats wrong with me and I gave up trying to tell people. I think it makes feel better that people don't treat me different if they think Im perfectly fine. Whats said is that I used to be more focused than them with fitness and nutrition. Friends would call me for advise. lol

Ive met with so many GP and shocked at there lack of interest. I get so frustrated at them and always end up having a rough conversation. They get annoyed with me because I read so much and know so much and insist to discuss things on an intellectual level. They just want you to listen because they are doctors and your not. I can't stand that because when it comes to my condition I know more than they do, they should also listen. I am hopefully going to germany in the summer and will meet a fibro specialist there.

take care
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Re: Hello! newly diagnosed but unsure

Postby hooplykim » Sat Mar 09, 2013 12:35 am

Moegreen

You do sound a lot like myself before I found my current GP! I too insisted on discussing everything about my symptoms and I don't know how many times I used the phrase " I may not be a doctor, but I do know what I'm feeling!" It's our bodies and we have every right to know what's going on. Many medical professionals still don't like to diagnose FMS, I don't know whether its cos they think it doesn't exist, or cos they don't know how to deal with it. It does take a long time to diagnose cos there is so much symptoms to work through before we arrive at the " yes, I think it is fibro" some docs may not like a patient seem more knowledgable than them , who knows. My doc actually told me to read up as much as I could about it and we discuss what we both think and that helps soooooo much.

Have you ever heard of the lightning process? Have a look cos some people think it might be worth a shot, but I also think its expensive

I do know how you feel with the workout and stuff, especially if your friends still do it, I miss the gym but the worst for me is when people come up and ask when I'm going to tattoo again, I sometimes just feel like shouting out that if I could I would!!!

You know what strikes me about you tho? You sound very very knowledgable not only about fitness but about the symptoms of fibro and of vitamins etc, have you ever thought about trying to devise your own fibro fitness programme? Cos as we all know, the right exercise can eventually help on the road to living an almost normal life with good meds etc. cos that's basically what all this lightning process and stuff is, and most of the expensive fibro specialists in the private clinics, and maybe even Germany when you go, will want to try exercise. Who better then someone with the condition themselves, and all this knowledge that you have, to actually devise a better plan, I am sure there will be loads of sufferers you could actually help, it's worth a thought eh..........
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Re: Hello! newly diagnosed but unsure

Postby moegreen » Wed Mar 13, 2013 6:14 pm

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