Hi - am going through a flare up but at a stage now to get back down to life again. Nearly 2 years ago I had a severe withdrawal from my meds! I was on these because I was feeling suicidal due to: losing my job (I'm a whistle-blower). DWP breaking their own P&ps, my FM, family probs concerning my son who suffered a TBI. I couldn't fight the 'good fight' against the corruption contaminating my own world & that of its victims. Was put on an antidepressant and proceeded my own personal healing process - Then apprx 2 years later my Dr insisted that he'd given me my script which he hadn't & before I knew it I was totally out of control with lightening strikes going off in my head & other pretty horrendous symptoms. I was so bad that I guess I should have 'called an ambulance' but didn't have the thought processes to enable me to do so. The severity of the symptoms lasted apprx 2 months, I can remember things happening after this delay! The reason I've mentioned all of this is because a lot of my recent very scary symptoms (I was hospitalised twice recently and cardio monitored) have been so similar to that previous withdrawal. I live alone & being agoraphobic didn't help. I called the Drs who said to make an appointment & go in (I've never understood which part of agoraphobic the medics don't understand). Needless to say this didn't happen. A bit further down the road I was feeling depressed again ( this was all prior to my FM being diagnosed) & the Dr put me on another antidepressant. I was recently told to discontinue all meds as I had some cardiac procedures imminent which I did. They discovered I had Bigeminies (not anything to worry about )and bradycardia but that this had nothing to do with the other symptoms I was experiencing (which have since all dissipated - Mental confusion taking the longest). I has a cat scan which was clear. Now recently I received a call from a Dr V, who was really pleasant and who said ( I just pop in now and again to help out in the practice).....so discussed my experiences with him & he said he'd arrange a psychs appointment for me gladly. Later that evening he called again, apologising bless him, for not being able to do this, saying that he'd been through my notes and hospital notes & although he can see that I suffer some depression & anxiety, that this does not account for the Pathology he's seen within them and that a pulse of 36 etc needs to be investigated further. SO now, if you're still reading. Yesterday I had a call from the surgery asking me to change an appointment I'd made with a locum Dr M (who I COULD talk to) on Nov 14 - to a different Dr who is the replacement Dr for my registered Dr who is retiring. I agreed as I wasn't going to involve the receptionist. The Dr V , who was pleasant and who had just 'popped' in to help out ' did say that I can self refer to an anxiety/depression clinic .......all of this means GOING OUT AND MEETING UNKOWN QUANTITIES (agarophobia). So just can't do !
My own thought are that I contact the surgery and ask for a telephone call from the pleasant and easy to talk to Dr V because he did say it all needs further investigation - but who's handling that & what does it entail. Also that I reinstate my appointment with the locum Dr M. as it was her who referred me for an endoscopy & colonoscopy - & so far the endoscopy has shown Pylorus erosion (totally avoidable if my GPs had listened to my symptoms and treated accordingly as I had been symptomatic for 27 yrs). NOW the colonoscopy is yet another story ...
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Whatamug1
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Sorry to learn you are going through all this. Just a thought, if you have a phone number for your local mental health team get in touch and ask for a home visit, I know this may vary from one area to another however you really need to start the ball rolling now, there is a lot of help out there and it goes without saying you can come to this forum and someone is sure to be of help. Lou x
Will do Lou. Just spent the whole morning on the phone (when I wasn't on here lol) - as my calendar tells me that my colonoscopy is due tomorrow but I've had No phone assessment No bowel preps etc ..... So between Drs Receptionists - Endoscopy Units & consultants secs .....I discover that my notes have been filed away as on the Secs screen (a letter I did receive and understand) it says : that patient to inform secretary when heart tests completed. They have but the screen also says that they feel the safest thing to do would be to wait until this has been fully assessed. To date No one has contacted me about this just as no one has contacted me about any Cancellation. I thought the Cardios would take care of this from their end. Why would anyone NOT get confused X cheers for your words Ann
Sorry, I am editing my post becaue I didn't see your reply above. And of course you have to prep for those -scopies. ANyway, here is what I originally wrote:
You have been through a lot. But I think you really need to get out to see the doctors as they advise. You were able to get out to the CT and the endoscopy, and I bet that was pure torture. But could you get enough anti-anxiety meds for the trip to the mental health specialist and have someone, a friend or family member take you? Someone you know, not an ambulance driver, etc.,, but someone you love and trust who understands how difficult this is for you?
Or like whatamug (what a name!) suggested, arrange for home visits - if possible.
I know my son would if he could drive. I don't have many friends as I've very little to offer & they disappeared at a point where there just wasn't anymore to give. You're right I do have a friend who would be willing & who stuck around when all and sundry flew off into the sunset. I'd even go as far as saying Id got rid of them ....they just sucked me dry. Tis a GOOD name - I WAS ..& it's a great reminder as I have a tendency towards always wearing - "Rose tinted glasses" ....as I've been told. (I'm not on any meds as they haven't reinstated them ...since the Cardio Test episode but have reinstated a telephone call from the locum Dr I trust but that's not till Nov 14th. So it's paracetamol & boy have I needed them). My prob I've been told is I don't look sick & don't look my age and of course when I do go out (ha) I appear normal. The general concensus around my immediate area where I live - is that I'm an alcoholic (this for the past 10 yrs) - 2 friends the one mentioned before & my ex neighbour have both heard this is various supermarkets from various people I live around. This because I do tend to sway and hold onto things & get dizzy/lightheaded and in turn I have to get down low (in my front garden) ....It's ok - it's just ignorance & I feel more pity for them than anything - like me - they need to GET A LIFE !!! LOL Ann. Thx you
I have read your post with so much pain and sorrow for what you are having to endure, and I agree with lou60 that getting a home mental health visit could be very beneficial for you?
I was wondering if you have spoken with Social Services? As they could visit you and find out what your needs are and how best they could help you? It may be worth a phone call?
I want to wish you all the best of luck and I genuinely hope that you can find some resolution and relief to these issues.
I agree with other replies. Also, I have a variety of complex physical and mental health probs and I would recommend getting a 'care plan'. My gp suggested it and I have found it a great help when talking to different health professional because it includes details of all your other diagnoses, meds, treatments etc. It takes the pressure off you having to remember everything, as well as the dr. who knows you best giving advice on what helps and what does not!! I feel for you, very much, and I do hope you get to find someone you can trust and feel comfortable with. Tulip xx
Thx Tulip - a Care Plan is a brill idea as it's the only way a Dr can see the whole person. Have often in the past been asked for the med history bit & it just makes me corpse as the brains first thought's been - your the dr you should know.!Hopefully the locum Dr M will help with this next month have had to fight off 3 receptionist calls so far offering alternative Drs .... I've never been so popular lol & my driving friend's been booked ahead & will come in if need be. Have always beleived if anythings worth having it's worth waiting for so just hope I'm right. As I said to Ken. My situations Sad but pls don't take it on board. I've received more help on this site since finding it than I ever have had before and I'm so grateful. ONE QUESTION THO' - Do those who suffer from fibromyalgia have more EMPATHY towards others? Are we born with this caring about others to our on detriment syndrome ??? X ann
I think you have a point. Maybe fm often includes such a variety of problems it gives sufferers an insight into how others in a similar position feel, and tips in navigating the way through nhs and dwp to get the right help. Wont take the pain away, but at least it helps when you're in need of extra support and advice. Take care. Tulip xx
"Do those who suffer from fibromyalgia have more EMPATHY towards others? Are we born with this caring about others to our on detriment syndrome ??? X ann"
Hmmm, wouldn't that be one halluva reasearch study . . . I'm working on how to phrase appropriate multiple choice answers!
Anyway, if we aren't born or raised with empathy, I bet that most of us learn it (in the School of Hard Knocks) once we find out the many challenges of FM.
Like you and many of us, I am one of the invisible, for the most part. People just say I look old. JK. I too sometimes have balance problems and probably look drunk but the people whose opinion I care about know that I have FM and 10 years of sobriety and it is unlikely that I am. Ya never know.
Good luck with developing a care plan mugs. That sounds like a wonderful way to go tulips. I will see how my own primary care doc feels about the idea.
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