How do you get medics to just listen to you?

[coffee37]

HI everyone how do I get medical people to just listen? I'm at the end of my rope trying to explain to them my symptoms are worse and express my concerns that I've been falling over due the effect of lower limb numbness they just won't listen.

[Hidden]

Start by telling the person you feel no one is listening or taking it seriously, they should let you finish what you want to say,then tell them how nothings been tested that sometimes people can have more than one health condition.

[Hidden]

Also take someone with you so they know you have a witness as to how thier about to act next.

[Hidden]

you cant as so often beyond there capabilities as if it's not on the screen then there like a fish out of water!!!

Too much iphone culture and not enough raw thought process

[Mandypandy1969]

no idea. I am in the same boat and forever googling to try and find stuff out for myself. hugs. xx

[Hidden in reply to Mandypandy1969]

I was always told keep it simple treat them like children!

[desquinn Partner Volunteer FMAUK Trustee]

really would recommend compiling a journal for a week or two. Keep it simple in a table and have each day, events that happen and the pain score out of 10 you experience. Also the meds you are taking and how you feel.

give it to the doctor and say that you have trouble expressing your self at the appointment and thought this would help. The act of doing it is something in itself and may help the doctor understand how you are feeling.

Doctors do want to help you.

[Stray]

Write it all down and let the medical expert read it 😊 good luck, I know most doctors are deaf😊

[Pips04]

My experience was so bad with my doctor that I wrote to him, I was very honest and asked him if I was his wife, daughter would he treat them in the same way he treated me. He wrote back and said I had misunderstood him etc etc I changed doctors the same week, now I know I’m being taken seriously by my current doctor. They are blind to every outside their medical book Pips

[Marty52 in reply to Pips04]

That is the key. If your current doctor is not sympathetic, change your doctor!

You're fighting a losing battle trying to get any sense out of one who is 'deaf' to your situation.

[Kingdom1914]

Yes I get numbness. When I go to the Doctors with a symptom and find it probably relates to Fibro Doctors just give me that look and eh note what I say. Went about hot flushes and said to a different Doctor could it be because my Hypothalamus isn't regulating my temperature (had problems for 25 years and tablets do nothing!). He said Yes, what a shock! So I'm sticking with this Doctor who listens and has some understanding of Fibro. Hardly any Doctors seem to understand Fibro, think they need a course in it! Try another Doctor.

[Hidden in reply to Kingdom1914]

Hi Kingdom - I am wondering the same thing about myself. My body temperature seldom gets over 97.7 and frequently down in the 96 or less range. Then I have extreme craniofacial sweating, and those two together seem to mean a hypothalamus malfunction. But what do they do for it? I haven't seen any treatments mentioned yet, although not much research time yet. Just curious.. Thanks

[Kingdom1914 in reply to Hidden]

Yes I don't know what they can do. Unfortunately my Doctor has said come back when I've finished having Heart tests and he will look into it. No idea what he will do? I have terrible sweats where my hair is wet and the back of my neck and my face are dripping. Then sometimes I can be freezing and shivering, hate winter. The 2 often come one after another as well. I think most Doctors see the symptom as nothing but it's horrible! Really affects your life. I'm fed up after years and years of it. If you get an answer please let me know.

[Hidden in reply to Kingdom1914]

Hi Kingdom - you have described me exactly.. The weird thing is that I can take my temp, and it seems like the lower I am the more I will start to sweat.. and the higher (which almost never gets over 98) I am - say 97.5, the colder I will get. And like you I can go from one to the other without a break... When I get that cold, I literally feel like I am freezing - nothing I put on, a hot shower, or even a hot cup of something will stop it. It's like I have to gradually warm up by walking around, etc.

As for the sweating - I recently discovered some turbans called Miracu 2 Pack Hair Drying Towels - they work so well... I use them when I am out, rather than just dripping on everything, and unfortunately, everyone around. It's embarrassing. I have started wearing them around the house when it starts and even wore one to bed last night. It took care of the sweating for a while anyway. =)

I have an endocrinologist appointment in November... Originally they thought I had a pheochromacytoma, but they are not sure now. The last appointment was in May right before the temperature aberration started, so I will talk with her about the hypothalamus thing then. I'll let you know what I find out. I'm sorry... but as miserable as I am, it is still nice to know someone understands... ha ha. I told my dear hubby when he came in from mowing the 1/3 acre lawn yesterday in "feels like" 103 degree heat dripping wet, "Now, do that day and night, with no reason for it, and you will know how I feel almost all of the time." Bless his heart... he just looked at me and said "I'm sorry sweetie..." - What a nice man (but I knew that - =) )

Have a nice week Kingdom..

[Kingdom1914 in reply to Hidden]

You too, good to have a supportive husband. Hope you find a remedy that works. Mention the hypothalamus not working for those with Fibromyalgia. Take Care.

[Marz]

Have you discussed Peripheral Neuropathy with your GP ? There is more than one cause of lower limb numbness - in my case it was B12 Deficiency. If your B12 result is below 500 you can suffer neurological damage which can be irreversible if left untreated ... Docs are too quick to say your result is normal when it is bumping along the bottom of the range ...

Will post a link when I am at the PC.

[Hidden in reply to Marz]

Hi Marz - That is true... My doc kept telling me my thyroid was normal when I was at the bottom of normal and always exhausted... ha ha

[Marz in reply to Hidden]

There is a Forum here on HU - Thyroid UK. I am a member there and you would receive great advice. Looking at your other posts it is possible you may have Hashimotos ... happy to help. You can post your results there and members will advise.

😊

[Hidden in reply to Marz]

Yeah - I've been diagnosed for 25 years now, and have it under control.. Thanks though...

[Marz in reply to Hidden]

Great news 😊

[coffee37]

Hi everyone thanks for all the great advice I am seeing a GP tomorrow at what they lovingly call the one stop shop which means I am allocated 6 mins to talk about one thing I shall try to ask more if i'm not shut down. This was initially my medication because I am concerned it has not been reviewed properly for 2 years. Last time 4 months ago ( Locum GP ) when I was having a bad flare and the meds did nothing to touch the pain I got told to just double it. When I raised a concern about this and if any other alternatives were available to try instead he promptly got the BNF book out and shoved the page under my nose stating "its safe see" so I just left as I was in to much pain to argue. So taking double was now 60mg dihydracodine 4 times a day and 600mg gabapentin 4 times a day only problem with this he didn't double number prescribed so every 10 days I have go to collect more on Monday was refused hence going tomorrow.

But since that I had a pain clinic appointment which was traumatic as usual this time a different consultant showed up great I thought a different opinion my be good. OH NO! 1 She hadn't seen or got my notes 2. She couldn't even get my name right despite being told repeatedly by my partner and I 3. "I'm here to talk about your backache" were her first words followed by the wrong name again. 4. Only things I can do are facet joint injections or an epidural procedure to numb my leg pain.

I explain I had already had a series of facet joint injections under x-ray from a orthopaedic spinal specialist and they didn't work that why I was seeing chronic pain specialists and rheumatology at his request to my GP. She basically called me a liar I also tried to explain her colleague had tried a lidocane infusion but that it had made all my symptoms worse and six weeks after I had a small cardiac event and that I was concerned that a epidural would make the numbness worse and result in more falls. I was informed they were the only choices I had left to me other than my pills here are some leaflets you have a month to contact us with a decision or there is nothing more that can be done.

I thought Chronic pain management was also supposed to support people in the management of the pain not just stick you with needles and send you on your merry way!

Or at least know who you are.

So now I'm hoping GP will refer me to the team at the hospital where I work who are willing to see me if I can get a letter and possibly look outside of box to see if I have more than just osteoarthritis and fibro going on. I'll keep you posted thanks again for the advice here hoping I don't get an ignorant GP tomorrow.