Getting it out of my head

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Getting it out of my head

Postby Pretzelnut » Sun Jun 30, 2013 11:53 pm

Hello, long time reader, 1st time poster.

i had a traumatic childhood and got diagnosed with PTSD 2 years ago, I have anxiety and social phobias with mild agoraphobia where new and strange places are concerned. I get panic attacks too.

I used to bounce back from stress, twice as strong but this past year has been awful. I just don't seem to bounce back at all.
I had a major episode of stress in February, and a serious chest infection, which I think has finally kicked everything off.
I have a good doctor who has just given me anti-depressants of various types for the past 3 years, but my mum has fibromyalgia and we have the same doctor, so she knows what my mum is going through, and suspects I maybe too.

I just got referred to a rheumatologist. I have no idea what to expect.

I guess I'm just trying to get my head around it all. I knew it was a possibility that I may get it one day. Just didn't expect it to be now.

The hardest part for me is the brain fog, I can handle being tired, I have 3 kids, what I struggle with most is losing my brain, not being able to finish a sentence, or find the words, forgetting what I was talking about. Failing to do the simplistic of mathematics equations. I feel incredibly stupid and frustrated all the time as I'm getting words in the wrong place or saying one thing but meaning something else. I can't talk on the phone as my brain drifts off and I forget I'm even talking to someone. It's frustrating as I know it's all there, just spheres something getting in the way all the time and making it impossible for me.

The next worse thing is constantly yawning. It can be 9am and I'm stood at the school gates yawning my head of cos I'm so exhausted, that I go home and do nothing for 6 hours because, I just don't have the energy to do a thing. Knowing I have to reserve what little energy I do have for when the kids get home.

I also suffer terribly with migraines and have done for 20 years. it took a long time to get them under control, as I go blind with them, I had had them controlled for about 3 years, them, wham this past year, they are uncontrollable, none of my meds work anymore. I had to go to the doctor a few weeks ago to get a tramadol injection and an anti sickness injection, as I was suicidal with pain.

I just got diagnosed with IBS too, it gets so bad I get rushed to hospital via ambulance. Only a few weeks ago, I collapsed in pain, passed out and started to have a seizure, my 10yr old found me and called an ambulance, I had vomited everywhere. I got took to hospital and got my usual morphine injections and sent home. None of the meds the doctor gave me seem to work.

My doctor is very understanding but her surgery doesn't like giving out pain killers for anything stronger than co-codamol. In their words its easier not to give you them, than to give you them and they then have to deal with a patient who is addicted to pain medication further down the line.

i think i need to ask for a refferal to the pain clinic, my doctor never suggests anything, i have to ask, which is daft as she has the qualifications not me. Stupid thing is I have a huge tolerance for pain medication, it just doesn't work. When I had my son by c-section the anesthetic wore off and I had the rest of the op via gas and air, I never get numb at the dentist, so have to have a general anesthetic or sedation if any work that needs doing.

My knees, back, shoulders & arms hurt everyday, from mild to crippling. Sometimes when i yawn my jaw locks and it hurts like hell. I'm now at the point where I can't lift my arms above my head. I'm struggling to take a shower as I can't stand for long or wash my hair, as the energy just gets sucked out of me, yet I can't take a bath cos I can't get in and out. Dry shampoo is my new best friend. I can't even lift my arms high enough to hang washing on the line without great effort.

I didn't really put 2 and 2 together until a few months ago, everything else has been ruled out, I've had all the blood tests. I've always been underweight slightly, but since January I have gone from 56kg to 72kg with NO explanation, even my doctors mouth hit the floor, as my weight has always been an issue for them in the sense of no matter what I did I could never put it on.

I quit smoking cos I was feeling so unfit and unhealthy, yet I feel more unfit and breathless now than I ever did.
I'm always cold, always, even in summer I want the fire and heating on. I never seem to be warm at all.

I never get a day off, if it not one symptom it's a different one. have a list of 60 FM symptoms, I printed them off and showed them to my doctor, she had to photocopy it for my records as she didn't want to type out all 57 of the symptoms I'd highlighted. Most of them I just thought were general everyday things so I never questioned it or put 2 and 2 together.

I never sleep well, I have flashbacks and nightmares relating back to my childhood. When I do get some sleep, it's never enough. Although right now I'm going through one of my phases where I won't sleep for 96 hours cos my brain just won't switch off, and I end up having to beg and plead for the doctor to give me something to sleep.

I'm really struggling on a day to day basis. I just seem to be having a 6 month long trough. I'm desperate to cut a break so I can ride a peak even if its just for a day.

I've applied for DLA, I got a letter saying they were writing to my doctor, my doctor has replied and thats now with the decision maker.

Sorry for the long waffle, I just needed it all out of my head.
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Re: Getting it out of my head

Postby FluppyPuffy » Mon Jul 01, 2013 8:41 pm

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

Sorry to hear it's suspected you have FM :( :( :( Hopefully the rheumy will be able to give you some answers when you have your appt :fingerscrossed: :fingerscrossed: It is a difficult thing to get your head round, even when you know there's a chance you could be affected by it due to a family link such as you have with your mum. If it is confirmed, the best thing to do is just take each day as it comes. Try to get the best out of things, and learn about how it affects you, then you'll start to find the most suitable ways for you to live with your condition.

There is lots of info about people's experiences when being dx'd across the boards, so maybe having a bit of a look could give you some ideas of what you could expect. They all tend to have their own approaches, so it's difficult to say what exactly will happen :facepalm: :facepalm: :facepalm:

As a very, very general guide tho, you will probably be asked about your medical history, family links, the symptoms and problems you have and how they affect you. You may be examined physically, which could include the tender point test. This is where particular areas around your body are touched by the rheumy, and if they feel painful, it can be used as an indicator to FM. Depending on the info they have, and what is said during your appt, you could be given a definite dx there and then, or the rheumy may feel it is necessary to send you for additional tests, scans etc, then give you a dx at a follow~up appt. They may also make suggestions about meds, treatments and/or other therapies that might be helpful to you.

After your appt(s), your GP will be advised of what has been determined and said, then usually you will be discharged back into their care unless the rheumy wants/needs to see you for any further follow~ups.

As I've said, this is just a very, very general idea of what could happen. Between now and your appt, to help with giving as clear a picture of how things are, you might want to consider making some notes about your symptoms, problems etc, maybe even keep a diary for a while. As well as helping explain how things are for you, it can also be used as a reminder for things you want to be sure you tell the rheumy about. You could also write down any questions that you want/need answering, as it's not unusual to forget something you wanted to ask, only to remember it on the way home or something :facepalm: :facepalm: :facepalm: :facepalm: :facepalm: :facepalm: :facepalm: You may also want to consider having someone go with you to the appt, not only for moral support, but an extra pair of ears and eyes can help with remembering what was said, as well as adding in extra info that you may have forgotten or not considered quite relevant.

I think I've waffled on at you for enough for now :oops: :oops: :oops: Unfortunately I haven't managed to cover everything that you've mentioned in your intro post, thanks to being foggy and my head also :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: :hit1: When things are a little clearer and less :hit1: :hit1: :hit1: :hit1: :hit1: for me, I'll see if there is anything else I can add. In the meantime tho, having a look and read of things on here may help things make a little more sense. And anything else that you want to know about, just ask and we'll try to help you with it :cow-wave: :cow-wave: :cow-wave: :cow-wave:
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.

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Re: Getting it out of my head

Postby denys » Mon Jul 01, 2013 11:13 pm

Hi and :welcome: to the forum :cow-wave: :cow-wave: :cow-wave:

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.
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Re: Getting it out of my head

Postby Pretzelnut » Fri Jul 05, 2013 8:28 pm

Thank you.

I am trying to keep a diary but the brain fog makes me forget :cry:

I'm also struggling with what to write, I put don't pain and where I'm having it, how tired I am etc, but I know I'm probably missing loads off as I don't know or can't remember what the words are, it's very hard.
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