Letting things get on top of me.....

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Letting things get on top of me.....

Postby Purpledot » Mon Jul 08, 2013 9:30 pm

Sorry about this post, but things are getting on top of me and I know you lovely people will understand. I think I just need to get it all off my chest..........

I have been ill since I was 17 (so, 31 years now), and had diagnoses of Fibro and ME. I have always put on a brave face, kept going as best I can and have tried to be as 'normal' as possible. So much so that a lot of my acquaintances etc had no idea there was anything wrong.

However, my health started to deteriorate last year after breaking my wrist, and things took a drastic turn for the worse in November when I became really ill with imbalance/vertigo/nausea etc.

Long story short, it took me 6 months to get an ENT referral from my GP to rule out an inner ear problem (he was sure it was major flare-ups of the ME/Fibro so didn't see the point in referring me anywhere, but I said I needed to rule out other causes before I accepted it was all caused by them). ENT ruled out inner ear and referred me for a brain MRI. I waited 6 weeks for the MRI, then another 5 weeks for an appointment with ENT again (this came completely out of the blue with no explanation) who said my MRI had shown lots of white spots all over my brain and I would need to see a Neurologist. ENT said they would refer me directly to Neurologist, but told me to go back to GP and get some medication that increases blood flow as it could be lack of blood flow to the brain, and that they would write to GP to explain. Saw GP, but he had had no letter and no scan result. Still waiting for Neuro appointment. Also waiting for appointment at CFS/ME clinic (refused to see me once as also have Fibro, but GP as tried again).

I have always tried to remain as upbeat and positive as possible, but I have found that last few days have been really difficult and I can feel myself sinking into a real low. I just want some answers. I have no idea how long I'm going to have to wait to see the Neuro, then he is, apparently, more than likely going to want to do more tests etc, so I will still have no answers. I feel so ill and can't even go out any more unless I really have to, and then I have to hold on to someone to even be able to walk really slowly and I hate every minute of it as I feel so ill and weak and overwhelmed and in pain. I am still not convinced that my balance issues are caused by the
Fibro/ME but it is just so hard to keep fighting for answers. I am just exhausted.

Every day when the post arrives and there is still no appointment letter for me lying on the doormat I can feel myself getting more and more low and frustrated.

Although I have a very supportive husband and lovely teenage son, I feel so lonely. I feel as if I am living on the edge of the real world, and that I'm not really part of the real world any more. I don't feel as if I have a life to speak of any more, although I have some wonderful friends who all text/phone and visit regularly (I have even started to put them off as I can't cope with visits much any more).

Anyway, thanks for listening (if you're still with me) and sorry for the depressing rant!
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Re: Letting things get on top of me.....

Postby whoami » Tue Jul 09, 2013 12:45 am

Purpledot.....hun you are so far from giving a depressing rant.

What you are feeling is so understandable. It is hard not knowing but thinking there has to be something else. Over the years I have felt that there has to be something else wrong with me. Something that will show up if they just keep looking. Something that has a cure and I can be fixed.

As far as your scan goes...why don't you make a call or appointment to see your GP. Ask him/her if it is possible to call and get a verbal report on the MRI if he has not received it yet. Explain how anxious you are. It is hard to wait. All sorts of things go through our minds.

I can understand your feeling lonely. It is hard to explain how you feel to someone without fibro. Sometimes it can feel that the world is passing by. You are never alone on this journey. We are here to walk beside you, Hopefully, when you are feeling somewhat better you can find ways of enjoying everything you always have.

I hope you get some answers soon. I can feel your frustration in your post. xx
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Re: Letting things get on top of me.....

Postby FluppyPuffy » Tue Jul 09, 2013 10:41 am

I'm still with you, and you're very definitely not alone, well not in the cyber~sense anyway. Whilst we don't see each other face~to~face over a proper :cup1: :cup1: the cyber :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: we send out do find their way to you.

No matter how positive and upbeat we try to be, it's not something that we can manage to do 100% of the time. At some point along the way, dips and lows are inevitable unfortunately, I've had a good share of them as well :( :( :( :(

Being stuck in LimboLand isn't helping things, it never does :( :( :( And once you find yourself there, it seems like you're in there for life because of how things are dragged out.

Have you tried contacting the Neuro dept to see if they can give you an idea of when an appt might come up for you?? It would at least mean you know you're on their list. If you're in a position to go at very short notice, you could also tell them that you'd be happy to take a concellation should one come up. Or, as whoami has suggested, tell your GP about how all this worrying and waiting is affecting you and see if they can contact the Neuro dept on your behalf to try and find out about things.

I understand how all this is affecting you and making you feel as balance problems, nausea, and vertigo were some of the first things I started to experience, but due to their prominence I was initially dx'd with Meniere's Disease and had 4 years of treatment that did absolutely nothing to reduce the intensity of my symptoms or make me feel any better, so at least you have had such issues ruled out and are now onto the next stage of the finding~out process rather than having a period of time believing that you have some answers, only to discover a bit further down the road that the dx and treatments you have been given is wrong and that you're back to the very start of things again.

Try to just take each day, or each part of each day as it comes. If you can, turn some of your focus onto other things, it may help you feel a little less fraught about and help make some of the Waiting Game pass a little more smoothly that it currently is for you.
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Re: Letting things get on top of me.....

Postby Purpledot » Tue Jul 09, 2013 4:21 pm

Thank you both for your lovely replies.

No post again today, but I am feeling a bit more positive and am jut adopting the attitude that what will be will be, it is out of my hands and there is nothing I can do about it.

I saw my GP last week and he said he couldn't give me any answers until I had seen the Neuro. I'm having a blood test at the surgery next week and the nurse is really good at letting me have a look at my notes and see the state of play with things, so I will check to see if te MRI result is in there and, if so, will ask for a copy.

Thanks again for your lovely replies xx
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Re: Letting things get on top of me.....

Postby denys » Tue Jul 09, 2013 6:14 pm

I agree with the others Purpledot and I hope this appointment comes through soon for you, if you know where the referral is for ringing as has been suggested wont hurt and would at least let you know the state of play. We are all here for you and are sending you loads of :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug: :grouphug:
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Re: Letting things get on top of me.....

Postby Purpledot » Wed Jul 31, 2013 10:29 am

Quick up-date...........

Eventually had appointment through for Neurologist - 12 September. That will be 17 weeks since my scan!

Saw GP on Monday as things are getting worse, and he is going to bring my appointment forward as is quite concerned about my balance/dizziness issues.

Am now waiting to hear from the Neurology clinic. Am not holding my breath!

Oh, and the local ME clinic has refused to see me, once again, because of the Fibro diagnosis and the ongoing balance/dizziness issues. This frustrates me so much, as my GP has been telling me for ages that he's pretty sure the balance issues are due to the Fibro/ME. Now, the ME people won't see me because of them, so that doesn't make any sense.

Have had major neck problems, and asked GP if something going on with my neck could cause the balance problems. He said if there was a problem with my neck it would have shown up on my MRI! Not happy about that, but will put it on hold until I've seen the Neuro. My GP seems reluctant to do anything else until I've seen the Neuro, which I suppose is fair enough.

Let's see if they actually do bring my appointment forward.

Thanks for all your support, guys. Will keep you up-dated, but don't hold your breath! xx
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Re: Letting things get on top of me.....

Postby denys » Wed Jul 31, 2013 11:14 am

Glad you got the appointment but hope they can bring it forward for you, sorry to hear you are still getting the runaround from the pain clinic its not unusual unfortunately, seems like a lot of CFS/ME clinic wont see FM patients. Let us know how things go and remember we are always here for you :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: guinea_pi_1 guinea_pi_1 guinea_pi_1 guinea_pi_1 guinea_pi_1 guinea_pi_1
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Re: Letting things get on top of me.....

Postby csangel » Wed Jul 31, 2013 12:01 pm

Hi Purpledot,

It's amazing how much back and forth between different people they get away with isn't it?! :fingerscrossed: :fingerscrossed: :fingerscrossed: you're on the home straight soon enough.

No real advice from me I'm afraid, other than to say :goodluck2: hope you get things sorted out soon :teddy-bear: :teddy-bear: :teddy-bear:
Health is not valued until sickness comes. ~Thomas Fuller
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Re: Letting things get on top of me.....

Postby FluppyPuffy » Wed Jul 31, 2013 2:12 pm

Hope your appt can be brought forward as I know from my own experiences how horrible it can be living with the dizziness/balance issues :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:

WRT to neck issues affecting the balance/dizziness side of things, in my experience they can. I have an old and long~standing neck injury that was caused by a car accident. I was left with a cervical vertebrae dislodged and fractured that needed repairing and fusing. Altho scans and tests showed everything was all clear, I was still having problems, incl dizziness. Even tho the neuro tests I had done showed that things were ok, the neurologist did say that as some nerve fibres are so fine, not all problems may be detectable by tests that can be done, so there could be some neurological reason for what I was experiencing.

As I've said tho, this was in relation to an old injury (20 years at the end of this year :yikes: :yikes: :yikes: :yikes: ) so there will more than likely have been changes in the tests, what they can detect etc but it is worth asking about it as the neuro~bod you see may have some experience/ideas that could be helpful.
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