I need advice please..

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I need advice please..

Postby Kriistiee » Tue Oct 11, 2016 9:58 am

I have been suffering from chronic pain for 6 years - undiagnosed. I have been back and forth to my GP who is very unhelpful. Today, suffering more pain I decided to try and book and emergency appointment. My GP surgery basically hung up the phone after minutes of being on hold, at one point I could hear the ladies talking and then they quickly hung up.

Basically, I rang 111 NHS and they advised me to go to A&E - I have no form of transport and the hospital is more than an hour away. Can anybody give me any advice? Is it necessary to go? There are people in car crashes and suffering from heart attacks etc so I don't want to waste resources. The pain is in my entire body, mostly the back of my neck/between shoulder blade and legs/feet. My arms are numb/tingly but also painful.

Sorry to rant and rave.
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Re: I need advice please..

Postby Northernlass » Tue Oct 11, 2016 12:13 pm

Hi Kriistiee, I do sympathise with your situation. My advice is to change your GP or to change your medical centre, if you can. You need a GP to take you seriously. Unless you have chest pains or severe sudden pain that you haven't experienced before, I don't think you need to go to A&E. If you have had chronic pain for six years, the pains you are describing are very likely due to your chronic pain condition, which sounds very much like fibromyalgia, and even possibly degenerative disc disease. (Not that I am a doctor, but I have both of those conditions and my pain is similar to yours). And if you do have Fibro, I''m afraid there is no cure and no satisfactory treatment, except for prescription painkillers that may or may not reduce your pain. But if you have been advised to go to A&E, then maybe you should go and tell the hospital that you were advised to go. You have the right to be seen, just like anyone else. However, all they will do in A&E, is to check your vital signs are normal and rule you out as an emergency case, which would give you peace of mind, at least. But you probably won't be any nearer getting a diagnosis because they will probably send you home telling you to see your GP. But if you are really worried that your pain could be a sign of something serious, like a heart-attack, then don't hesitate and call 999.

You do need to persevere in your attempt to find a diagnosis. Don't give up. Don't allow a GP to be dismissive of your symptoms. They need investigating. You evidently suspect you could have an illness like Fibro, so insist to your GP that you want it investigated and to be sent to rheumatology, even if you have already been sent there previously. There is no definitive test for Fibro, it's a case of elimination, lots of blood tests and scans and a physical examination of tender points on your body. The first time the GP sent me to rheumatology, they only diagnosed severe vitamin D deficiency, and I felt such a fool, thinking why could my GP not have diagnosed that herself by doing a simple blood test. But I knew there was more going on with me, and so I persisted.

Go onto Google, if you haven't done already, and find a website listing all Fibro symptoms and see how many you have. The more symptoms you have, the more likely you are to have the condition, and you tell your doctor what you think you might have and why.

It took years to get my diagnosis, and the problem with having Fibro, is that there are so many symptoms that it is difficult to know if a new pain is apart of the illness or something more serious.

Anyway, I hope you get to the bottom of it and that you get the help and support you need.
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Re: I need advice please..

Postby LindyM66 » Wed Oct 12, 2016 8:01 am

Hi K

It's awful trying to access the help required. I had the same issues earlier in the year. After many years of pain, I literally ground to a halt!
To'ing and fro'ing to the GP. Being fobbed off. Told to self refer to physio etc etc.
After presenting myself twice at A & E, the Dr on duty there called my GP and said " this lady needs further investigations". Hence, I was referred to Rheumatolgy, and received a diagnosis.
Be pushy, and don't be fobbed off.
Much Love
Lindy x
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Re: I need advice please..

Postby Yokofox » Fri Nov 18, 2016 3:56 pm

HI I am new to this site and have been reading some of the posts that have been put up. some of the things on here have made me think thats me lol and I do that and it is a comfort to see that there are other people out there with the same issues.

Here's my story (briefly)
When I was 21 I fell of my Gymball and hurt my neck and the hospital refused to Xray as they said that I was of Child bearing age????
I then proceeded in the coming months to have increasing amounts of pain in my neck and right shoulder with pins and needles and numbness in my arm and hand- the GP said that is was a trapped nerve and so I saw a physio and they recommended acupuncture and this helped for a while.
In the coming years I began to get pain in my hip, back and knees and was told that this was down to running and sports. This was later treated as Lymes disease as I do volunteer work in a country park and am regularly up to my neck in trees and leaves. The medications did not help and the symptoms continued and so I was sent at my request to the consultant at the hospital and they said that they said it was Fibromyalgia, now at 26 and due to get married this was the last this I wanted to hear and so I tired to continue as normal and ignore it. This obviously did not work and after seeing the nurse at the hospital today that have told me that they are referring me to the pain clinic and hydrotherapy and gave me some leaflets on long term pain management.

I have paid privately for counselling and have told my Boss at work and they do not really have an idea of how to help me and I am really struggling at work and to get through each day. The pain is so annoying and no one else can see it and so they just do not understand that this is how I am feeling. I keep getting dizzy spells at work and feeling sick, It is so annoying and all I want to do is live a normal life and not have the pain and discomfort. My Husband is supportive but sometimes I feel sorry for him and that he has married an old woman! The headaches I get are not just the usual excuse that females use to get out of stuff but genuine and this is a regular thing like the back of my head will explode! sometimes its like to process a though I have to sift through a fog in my head and that even basic tasks are impossible, even brushing my hair is a task some nights after work and asking my husband is not some thing I want to do at my age and I am now having to buy clothes that are easy to get on as I struggle to lift my arms sometimes and have to plan my wardrobe carefully.

I have never moaned about any of this but needed to get if off my chest in hope that someone will understand and has some kind of advise that will help?

Sorry for the long message, I have also just found a support group in my area That I am going to try.
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Re: I need advice please..

Postby *Lisa* » Fri Nov 18, 2016 4:24 pm

:welcome: Yokofox

It does sound to me like you have a good plan in place which would be the pain clinic and hydrotherapy.

I would also say that with therapies like accupuncture / hydrotherapy & physio etc... that for these to be of any benefit you do need to constantly have the therapy to maintain any benefits. Soon as the therapy stops then the body starts to seize up again. I found light exercise and stretching techniques on top of a therapy helps.

CBT talking therapy is also a good one to try. You can ask your GP for information and a refferal. This helps you learn limitations, pacing, elimating stresses and just learning tecjniques in how to help yourself and live with chronic pain.

Do go along to your support group. This can also help. Even if its just chatting to others about the day to day struggles as we all have this in commen. They may have more information and advice on things in your area you can do/try etc... that may help.
As a Public Moderator & Admin 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...Lisa
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