I am sure my Rheumatologist is wrong!

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I am sure my Rheumatologist is wrong!

Postby Topcat0001 » Fri Apr 08, 2016 9:10 am

Hi All

Please correct me if I am wrong but I have been in so much pain in the last few days but its all specific and I am sure if it was fibro it wouldnt be like this.

Pain in my ribs is so bad at night and a feeling off something moving almost like a baby kicking inside my ribs keeps happening when I am in a certain position.

My neck pain/stiffness has become so bad I can barely move my neck, it crunches, clicks, locks, I have limited movement and last couple of days keep getting a pain going through my shoulder down my left arm like a nerve/cramp it comes and goes isnt constant.

I am sure there is something wrong with my neck, dont know about ribs but all I know is I cant wait until the 30th June to see her again as I have to work and with my neck like this it will be hard going.

Does this sound like something else? If this is normal then fair enough I will live with it but I am worried there is some damage going on.

xx
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Re: I am sure my Rheumatologist is wrong!

Postby Pharaoh66 » Fri Apr 08, 2016 9:38 am

It's not necessarily Fibro.
I think, post diagnosis, we can all assume it is but other things happen to our bodies all the time. I get unexplained and very distinct rib pains which may be due to a sudden turn in the night stretching or pulling something. I can then go for days in severe discomfort with painful breathing but, in time, it settles back into the Fibro fog.
Necks are easily tweaked. Sleeping in the wrong position, a sudden head turn, keeping your head in the same position for a while and then moving it too quickly. All easily done and again, not Fibro.
I would go and see your doctor though. See if an X-ray or scan can be done just to check there is no damage.

Keep safe!
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Re: I am sure my Rheumatologist is wrong!

Postby migrembe » Fri Apr 08, 2016 9:52 am

If it is something new you should have it checked by your GP.

However, I get pain in my ribs that is so bad it interferes with my breathing and I have been in casualty because of it. I always say i have two types of fibro pain; long pain that travels up and down my limbs and round pain that effects my joints. Every little twinge and pain is amplified by the fibro and unfortunately pain levels can really be that bad that i have had to give up work.

Try using an heat pad on your neck and shoulders, I find it useful.

Beverley
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Re: I am sure my Rheumatologist is wrong!

Postby Topcat0001 » Fri Apr 08, 2016 10:00 am

Thank you to both of you.

The moving sensation under ribs is so weird, and my neck has been bad for a long time just never this bad or affecting arms.

I am going back to the GP next Tuesday, I am sure people think I am a hypochondriac. :(
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Re: I am sure my Rheumatologist is wrong!

Postby AlisonL » Fri Apr 08, 2016 10:14 am

I get pains/sensations in my left arm just like you describe, except there is also a permanent ache. i believe this is due to nerve damage I did when carrying my babies around (they are in their thirties now!) The best relief I get from it is from myofascial relief treatment - pricey but worth it for me. As for the ribs, I was told it was "painful rib syndrome" - Google it and see if you think the diagnosis fits you. Nothing much I have found to do about it - it is a dreadful nuisance, especially at night. I find propping pillows against my back helps a bit (I sleep on my side)
Having said all which, well worth complaining again - if you feel you are not being listened to maybe a different GP?
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Re: I am sure my Rheumatologist is wrong!

Postby Topcat0001 » Fri Apr 08, 2016 10:30 am

Hi

My ribs could be that, as there does feel like movement although the pain feels more like muscle night time is so bad during the day it feels like I have been exercising and over strained the muscles behind the rib cage, is your like that?

I have a great GP (although he retires pm Tuesday) :( but they have said if I am not happy with the Rheumatologist they will send me to another hospital for second opinion only thing is they cant do that until she has written to them and she wont do that until after 30th June (she has already told me she will be diagnosing fibro but wont see me until then)!!
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Re: I am sure my Rheumatologist is wrong!

Postby *Lisa* » Fri Apr 08, 2016 11:04 am

I have all the syptoms you say plus the delights of many more.

My main symptoms are severe stiffness in all muscles especially neck/ribs/back & jaw.

My muscles lock/strain/tug & pull/click & pop

I can barley move through the night when im in bed as my stiffness seems to be worse then and in morning and then again later on in day.

I can barely breath with the stiffness that tighens the rib cage so i have an inhalor & physio.

I wear a mouth guard at night to help neck stiffness and the TMJ which seems to help symptoms a little.
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: I am sure my Rheumatologist is wrong!

Postby Topcat0001 » Fri Apr 08, 2016 11:10 am

*Lisa* wrote:I have all the syptoms you say plus the delights of many more.

My main symptoms are severe stiffness in all muscles especially neck/ribs/back & jaw.

My muscles lock/strain/tug & pull/click & pop

I can barley move through the night when im in bed as my stiffness seems to be worse then and in morning and then again later on in day.

I can barely breath with the stiffness that tighens the rib cage so i have an inhalor & physio.

I wear a mouth guard at night to help neck stiffness and the TMJ which seems to help symptoms a little.




Maybe she is right then, sorry your so bad too x
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Re: I am sure my Rheumatologist is wrong!

Postby *Lisa* » Fri Apr 08, 2016 11:20 am

Well... its a bit complicated with me lol.

I saw a Rhuematologist a few years back with stiffness as gets very dibilitating and get injuries etc from it and my inflammation levels are up so he looked into possible Ankylosing Spondylitis. My physical tests were positive plus i have a family member with it but as i have anxiety & clostrophobia i cant do MRI's so went for a open one which was just as bad :shock: consultant could not clearly see as images blurred so he rit it off!!!!!!!! :-o :shock:

Now after seeing a skin consultant for another problem hes actualy seen a blood test my GP *rit off* (thinking Rhuemi had dismissed anything else---he hadnt! but GP wont believe me!) and so skin consultant over riding all and sending me to Addenbrookes hospital with suspected Wegener's Granulomatosis (auto-immune disorder) as my C-ANCA bloods are positive!

Me?... Well i know my body and even tho yes i know i defo have fibro i also feel i do have ankylosing spondylitis as that causes severe stiffness also i have other relating symptoms (physio said in all her career im stiffest shes ever come accross) so have a read up on that.

So now im on a waiting game and will see what addenbrookes say and go from there as i can request to see there Rheumatologist if they feel something is underlying and get a second opinion.
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Re: I am sure my Rheumatologist is wrong!

Postby Topcat0001 » Fri Apr 08, 2016 11:38 am

How frustrating for you.

I also have anxiety and suffer from claustrophobia (I wont travel anywhere as I am scared of being trapped in a traffic jam)!!
I have had an MRI before on my back and I was surprisingly ok in the scanner but it only took about 15 mins and I kept focused on the fact that both ends were open.

I am also losing my hair have been for six years its an all over diffuse shedding (lost about 50% now) I thought it might be related but the Rheumatologist says it isnt as fibro wont cause that.

Good Luck at Addensbrook
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Re: I am sure my Rheumatologist is wrong!

Postby *Lisa* » Fri Apr 08, 2016 11:47 am

I did just about manage an MRI on lower back a few years ago but took me hours with much distress and panic and even threatening staff as i just flipped :oops: totaly out of character for me so i swore i'd never go back in one.

My body was not full in either! but this other MRI he wanted to do all of my spine :yikes: :nono: luckily i was granted an open MRI in London but that was dredfull! i couldnt have the braces on they wanted me to have, again i flipped threatening saying id smash the machine up cause he was forcing this neck brace on me!! :yikes:

I remember having trapped gallstones and refusing an MRI... we dont go hand in hand lol.

Anyways somehow i did manage the lower back MRI and they could see i had a curve in lower spine/prolapsed disk and degenerative changes. Just wish i could have done this full spine MRI then i could have known for sure :( anxiety is a pain!! i have had CBT and going for more, actually off today but even tho it helps a little, my mind in other areas will not budge and no matter the therapy i will not go in the coffin!! :lol:
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Re: I am sure my Rheumatologist is wrong!

Postby Topcat0001 » Fri Apr 08, 2016 4:43 pm

Having anxiety disorder has its own problems without other issues to deal with :-?

What is the CBT for? I have had it twice now (two lots of 10 sessions but years apart) for my anxiety/phobia its great during the sessions but as soon as they stop I fall back into my old ways :(
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Re: I am sure my Rheumatologist is wrong!

Postby Roseofsharon » Sat Apr 09, 2016 12:37 pm

Hi

Having had fibro for years I can say that it can pretty much mimic most things. Having said that you do get used to how it presents for you, as we are all different.

Good luck, hope that things improve for you soon.


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Re: I am sure my Rheumatologist is wrong!

Postby *Lisa* » Sun Apr 10, 2016 12:44 pm

Topcat0001 wrote:Having anxiety disorder has its own problems without other issues to deal with :-?

What is the CBT for? I have had it twice now (two lots of 10 sessions but years apart) for my anxiety/phobia its great during the sessions but as soon as they stop I fall back into my old ways :(


Yea, I have noticed that even tho the therapists and doctors believe that once you have the skills then its for life so your able to lift yourself up when things start dipping but I try to explain to them that when body & mind are bad theres just no way to bring the skills to hand because being so ill and exhausted as the mind is doing back flips with everything but they don't seem to understand. I mean i'd like them to try there skills when they feel like they have been crushed by a bus and fatigue to the point you cannot move and your mind is just in inner space! eh! :shock:

But saying all of that it has helped in many ways just not them all. Better then nothing tho.

Im on my 3rd lot of CBT :shock: but i'll keep on trying anything even if it helps a little and for that period of time.
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Re: I am sure my Rheumatologist is wrong!

Postby Topcat0001 » Thu Apr 14, 2016 8:39 pm

My GP has referred me for a second opinion, so will wait and see what they have to say I guess.
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