doctor refuses to help with my pain

by liz
(plymouth)

A new Dr! Great I thought! My Dr has made my symptoms worse I have never had such widespread unrelenting pain. I had a NHS fibro pack sent to him. I sent in articles from fibro.uk magazine, I shouted at him and cried. He did not know what to do. He asked me which medication I would like to try as I had the info. I have been prescribed tablets willy-nilly with no follow up.

He would not make decisions as we were always waiting for letters from other departments.

I took an overdose, I was so tired -nothing!

Last week he told me that nothing would get rid of the pain so there was nothing more he could do.

I have now got a problem with my shoulder which pain makes me feel sick, I have been referred to the hospital but given nothing to ease the pain.

I am at the end of my tether and don’t know what to do. We have decided to see Prof. Davies hoping he can ease things if only a bit. This will be expensive what with the fees and travelling to Bristol.

I also have depression apparently that makes my case complicated. None of the Drs in the practice will treat me because my case is complicated!!

I will try anything but it needs to be structured, not hit and miss.

I don’t know what to do.

Any help would be appreciated

Liz Julian (Plymouth)

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Please don't give up
by: Lulu Langford

Wow - on my frequent fibro/CFS/lyme searches where I offer help, I am yet to have one single day that doesn't leave me totally baffled and even despondent.

Today, a sufferer told me her doctor has never helped her, has never done one single thing to help her pain or improve her life, yet 'I don't know what I would do without him.'

How does health care get to this point? Our medical professionals promise to do all in their power to heal us, without harm, yet somehow along the way, we have learned to worship them, be grateful if they don't help us.

So, if you took your car to the garage and it didn't run when you picked it up, would you be happy? Or if you paid for your groceries but could take nothing home, would you be grateful? Or what if your rent/mortgage didn't result in a roof over your head? Why then, is it a thing of wonder to have a supposed healer that doesn't do their job? What on earth do they say to make you think this way?

If my patients don't leave offered relief and hope, I haven't done my job. If it is for something terminal, I can't charge until I know it's working.

Yet globally, trillions weekly are spent on medical care - and what do we get in return? Chronic ill health, an exponential increase in the number of new sicknesses, side effects and eugenics.

And the world is happy with this. There are answers to invisible disease. Just stop looking in the wrong places and accepting no for an answer.

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I'm in agony and no 1 gives a toss
by: Anonymous

Hiya I'm a 21 single mum to 4 children. I am having big problems at the moment you see the thing is I'm terrified of metal in my mouth due to being mentally /sexually /physically abused at age 12. Something that isn't my fault so now I can't see a dentist as the phobia of metal takes over :-(. Well 4 teeth are so badly damaged and rotten they need pulling the agony is so unbearable I can not take it any more! I over dose daily on pain killers just to take the edge off the pain I'm in so I can take care of my children I would have thought with my situation the doctor would have referred me to a hospital for IV sedation to put me out of my pain and misery but No!!! And I’ve seen a dentist they also said No!!! So what am I to do? I can't afford private care but cannot live this way why will no 1 help me what will happen if a drug over dose kills me who will take care of my children still no one cares but the NHS will pay for breast implants on depressed woman what about those who are in agony and desperate for help do we not matter!!!

Comment from Anne: You need to have your teeth treated! Maybe it has to be done under general anesthesia

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Another change in my medication!
by: Cumbrian

In the second half of 2011 I was having irritable bowel problems, which some reports say go hand in hand with the Fibromyalgia. But my GP referred me for an endoscopy. That was clear and I saw a new GP in our surgery for the follow up. He decided to put me on a soluble form of tramadol during the day. So I take 50mg three times each day. At first I tried just taking them when I was in pain and was all over the place. However when I saw him again he explained that these pills should be taken regularly, ie take one three times a day every day!
I also complained of feeling really tired when I wake up in the morning and wanting to stay on in bed every day. So he suggested I cut back on the amitriptyline at night. So I cut back from 45mg to 40mg and then 35mg per night. It seems to have helped somewhat. Now that my body has got used to the tramadol I am in less pain during the day and not as tired as I was in the early mornings. Also the irritable bowel issue has eased up, with just a couple of problems so far in 2012. This time last year a good meal out or an Indian or Chinese meal was a real waste of money for me, I usually just managed to get it home before it passed right through. The tramadol I am taking is a soluble version made by Zydol, and maybe that has helped the stomach to settle down.
My first break from pain came with a course of Lyrica. The very first night after taking them I had 8 hours uninterrupted sleep and woke up without any pain. It was like a switch had been thrown that turned off the pain. I felt like there is life after pain!! However after a few weeks I seemed to get used to them and my GP kept telling me to take a little more. The increase always worked but only for 8 to 10 weeks before the pain started to creep back into my life. However if you are in terrible pain, I would ask to try Lyrica, as it really could be a life saver. Once you realise that the pain can be treated then you know there is hope, and you can move on from there. If your GP won't prescribe what you want/need, try another GP in the same practice. Don't say Dr A won't give you this, just start from the beginning with him/her and try to lead them down the route to the medication you want. I have been amazed at the difference in opinions of different GPs. Just don't give up!

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Same issue
by: Zephyra

Doctors constantly try to say fibro is all in our heads. They don't want to give us narcotics because they think we are addicts. I couldn't get my Veterans Hospital doc to even change my muscle relaxant. Try contacting your local Fibromyalgia Network and get a list of providers that deal with fibromyalgia in your area. You may have a lot better luck with them. Don't be afraid to doctor shop and be assertive with your health care. If your current providers aren't taking you seriously shop around until you find one that does.

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Any difficulties to sleep, Me too?
by: Anne

Do you have difficulties to sleep? Maybe amitriptyline 5-30mg in the evening would help. Have a look at Cumbrian's last advice.

Also you could take the free fibromyalgia test. It would help you make your case in a simple and concise way!

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More on Amitriptyline, Naproxene, Tai Chi
by: Cumbrian

Just to add to my previous comments - Amitriptyline has helped me to get more sleep which helped to restore my pain threshold to its previous level. Prior to this the lack of sleep had reduced my pain threshold so much that even the slightest twinge felt like it was life threatening. Now I am in pain but it does not seem to be as bad as it was before. The low pain threshold was "magnifying" every pain that I had.
In addition to the Amitriptyline my GP has prescribed Naproxen tabs in 250mg as a pain killer.
I use these whenever I have a flare up, taking two in the morning and further singles after 8 hours. They are quite strong but they don't seem to have any side effects. They can also be taken in addition to paracetamol which can be useful.
My GP also advised me to keep moving and to exercise as hard as I could. I am certainly in less pain the more I keep moving around, as staying still for a while, usually attached to the laptop, results in my joints seizing up and becoming painful again. I have tried the exercise and must say that it does seem to help, but reading the recent books I am now going to try the lighter Tai Chi method as found in this web site.

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Me Too
by: Anonymous

I have had this pain for over a year and seen every specialist to rule out everything else. When it seems fibro is the only thing left no one will help and they say there is no test to see if I have it. That is from a rheumatologist. He gave me Tramadol and said use it for a few weeks then decrease taking it at all. That doesn't work and my pain is worse. He said he didn't know what else he could recommend or tell me to do.

This seems like a nightmare.

It's ruining my personal life and marriage and I may lose my job as I just can't drag myself to work each day in pain.

I've asked my GP and the rheumatologist to make a formal diagnosis so I can at least protect my job and maybe adjust it so it is doable but they refuse. They treat it like a mental illness only. By that they mean it?s all in my head and not real.

I don't know what more to do either and feel exactly as you do.

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Ask for a referral
by: Cumbrian

I know how you feel, and understand your despair. I suffered for over 10 years before I finally got correctly diagnosed. My GP did refer me to the pain control clinic, who offered a Tens machine, but when I said that I wake up in total agony all over he said there was nothing he could do for me. I didn't know what was wrong with me, so I didn't know where to look until I read an article from another FM sufferer in the Daily Mail. I took that into my GP and asked if it was possible that I was suffering from the same illness. He read the article and agreed it was quite possible, and referred me to a consultant fibrologist. Whatever he wrote to the consultant seemed to do the trick, as he declared that FM was my problem and suggested a change of medication. I was previously on Lyrica, which worked great for a short period, but I was having to increase the dosage too often, and worrying what would happen when I got to the maximum dose. He suggested I reduce the Lyrica gradually and replace it with a low dosage of Amitriptyline. I started on 10mg and increased that weekly until I settled on 45mg. So never give up, it can only get better. If your GP won't refer you, change your GP, until you get one who will listen to you.

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