hi ,I have not been officially diagnosed with fibromyalgia, just spent 6 days in hospital in great pain and they can not find anything wrong, seen my GP they have referred me to pain team but still waiting, I have all the symptoms but in the meantime been sent home with cocodomal, this not touching pain, plus tummy hurts so much. hospital made me feel like a time waster . I am in so much pain how do I get them to take me seriously. should I call 111, just feel they will fob me off , but the pain is unbearable. any tips or help appreciated.
help: hi ,I have not been officially... - Fibromyalgia Acti...
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judithanne1967
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31 Replies
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Hi there
I am sorry that you are in so much pain.
Unfortunately getting a definitive diagnosis of Fibromyalgia can take years, as so many other conditions have to be ruled out first.
As far as what you do now, does your surgery have an out of hours GP that you could call?
Is it possible that your tummy pains could be IBS?
If the hospital have not found anything wrong, it would seem that waiting for your appointment with the Pain Team is all that you can do.
Wishing you all the very best
Lu x
Admin
no out of hours doctor, just told to ring 111, it was suggested it could be IBS but sent home from hospital with no information. they did lots of tests while in hospital and said they could not find anything wrong. so frustrating as in so much pain. yes I suppose it is just waiting game now, thanks.
IBS can be triggered by stress and/or eating spicy or fatty foods.
Have you thought about changing your GP if you don't think you are getting anywhere with the current one?
Have you seen a Rheumatologist? They are the Consultants who specialise in Fibromyalgia.
Even if you are diagnosed with Fibro unfortunately you will still have the pain as there is no cure for it.
All you can do is learn to manage your pain as best you can and try some medications to help with your pain.
It is very much trial and error with everything with Fibro as what works for one person will do absolutely nothing for another.
Lu x
Admin
early days, started off being told it was urine infection and given antibiotics, this did not help. pain got worse, taken into hospital. not seen rheumatologist. thanks for your help.
I'm sorry to sound so negative! The trouble is that with a lot of conditions once you know what it is, you can start looking towards specialised treatment.
With Fibro, you get diagnosed, get given a leaflet and get sent on your way!
Would you like me to lock your post for you?
Lu x
yes a bit negative, but it ok.yes feel like I have been believed and been sent on my way still in so much pain. don't know what locking my post means but ok.
should have said NOT believed,
Well, I could have said that if you get a diagnosis of Fibromyalgia all your problems will be solved and everyone will believe you and you'll be out of pain.
The trouble with saying that is that none of it is true.
You'll still not be believed by certain doctors and consultants ... So which do you prefer?
If you read my post Did you know ? It explains all about locking posts.
sorry not finding this very helpful.was advised of this site by a friend and you are the first to respond and you have made me feel as unbelieved as the doctors, thanks but goodbye,
I am very sorry. Please stay. I do believe you.
Everyone here will believe you.
I am in a lot of pain today and have just been trying to support people but it has just come out wrong.
I will leave others to reply to you in future if you'd like.
I sincerely apologise for any upset I have caused. It was not intentional.
Lu
that's ok I understand, pain does awful things, thanks for trying.
I know I shouldn't come on when I'm really feeling bad but I don't like seeing posts not answered.
Please stay. I am sure you will enjoy the forum. There will be more people around during the week.
I shall stay , hope you feeling less pain soon.
Thank you. I hope you get some relief from your pain soon.
Please stay, BlueMermaid is one of the most caring people and I've seen her help tons of people including myself. She must be in a lot of pain herself.
I think what she is saying is It can take a long time to get a fibro diagnosis mine was three years, which I think is about average. However, once diagnosed no magic wand is waved. There is no cure for fibro just relief from the symptoms painkillers etc.
First step may be to go back to Dr and get a referral to a Rhumetologist at the hospital. You can also talk to him about pain levels and see if he can try something different. You can also ask to be referred to the specialist Pain Clinic as well. It very much depends on your individual Dr which is best. The problem being there are no nation wide set of guidelines for dealing with fibro yet unfortunately.
If your GP isn't helpful or interested then find another who is. Younger Doctors seem to be more receptive.
I remember my consultant saying to me aren't you glad you've been diagnosed with fibro. She was sincere, but looked at her speechless. Three years of prodding and poking a range of different tablets to be told I have something you can't cure! Yep, I'm thrilled!
Please keep coming back. I think this is the best site by far, lots of friendly sufferers, great admins, and you can look up particular issues.
Best of luck Patrick
Sorry to hear that you are in so much pain. You will find that most of us on here are in the same boat on a daily basis, that what makes our wonderful Community forum, such an understanding and respectful place to be!
We share our stories and give each other dignity and respect whatever level of pain or misery we may be in. It's all about being compassionate!
May I ask you why you felt that the Hospital
disbelieved you? They must have though
something was up, otherwise they wouldn't have kept you in hospital for 6 days!
What did the hospital say your next step would be?
It wad just how some of the doctors snd nurses treated me as if I was a time waster and bed blocker. I refused to go until they sorted pain.nothing was found and was told should be reasured nothing wrong. No far from reasured as in so much pain. Finally saw a lovely young female doctor who said I wss believed and I would get more help and referrals as an outpatient.
Spoe to my doctor this morning she is increasing my cocodamol and got an appointment with her tomorrow for possibly more blood tests and she is chasing up MRI scan and pain clinic she is a lovely doct and think she is as frustrsted as me fornot kknown cause of pain.
Thanks for everyones rasurence.
It's really asuring that there are compassionate Doc's out there who truely care.
The best of luck.
thank you , I am probably crabby too as in pain, trying not to be discouraged. going to ring my doctor tomorrow.
will do thanks
I would just like to say that I hope you get some help soon, and do stick with us we all understand how frustrating it is trying to get answers and good treatment. xx
Am in an extreme amount of pain today. I think I should have just stayed in bed.
Thank you for asking xx
Hi judithanne,
after reading your post I thought perhaps I could give you some tips which hopefully might help you deal with your pain in a proactive way.
You have been through a very stressful time, so it's important that you allow yourself to recover physically and mentally.
I realize that you haven't been officially diagnosed with Fibro just yet, but a word you will hear a lot of with any chronic pain condition is....pacing yourself. It basically means don't do everything at once, but break your tasks down into small chunks with breaks in between. It takes practice, but it does work once you get the hang of it.
Hot baths with Epson Salts added, help greatly with aching muscles. As do heat pads and wraps. If you don't have a bath, only a shower, stand under the shower and aim the shower head over all your aching parts. Anti-Inflamatory gels rubbed into your muscles also help. If it is burning pain, use ice cold rubs.
When your pain is bad your muscles tighten and often go into spasm and you want and need someone to do or give you something to relieve it. With the type of pain you have with Fibro, the painkillers that are normally prescribed are Opoids. Tramadol and Co-codamol are the most commonly prescribed. Tricyclic-Anti-depressants prescribed at low doses and taken at night, help with pain and sleep. Amytriptyline and Nortriptyline are the most commonly used. Drugs used for Epilepsy are also used for the burning pain that you sometimes get with Fibro. Gabapentin and Pregablin are most commonly used. There are some others but these are the most commonly used drugs. Please bear in mind, that everyone reacts differently to meds, so what works for one doesn't work for others, and whatever regime of meds you are on, they never really take the pain away completely......but Fibro is managed using a mix of not only different meds, but also Therapies. Hydrotherapy, Physiotherapy, CBT Therapy, and Mindfullness. The last two are Talking Therapies where trained Therapists teach you how to deal with your pain and emotions in the moment, and not what might happen in the future, it helps a lot with some people. So although at the moment there is no cure for Fibro, with finding out what works for you, you can manage it, and not let it manage you.
I really didn't mean to write such a long post, and there is still other info, but if you wish, you can go to our Mother Site, fmauk.org where you will find lots more info on all things Fibro.
I sincerely hope that you are able to talk with you GP and sort something out in the meantime to deal with your pain. Hopefully you won't wait too long for your Pain Clinic appointment.
I truly hope that I have given you some tips on how to help your pain, and in doing so, I forgot to welcome you to our forum! So WELCOME! and I can honestly say that you will meet some fantastic caring people on this site, and the help and advice that they will give you has been tried and tested before by real people who suffer from Fibro and often other chronic conditions as well.
Take care of yourself, and keep in touch and let us know how you are doing.
GP. 😊😊
Thank you that was all so helpful just off to chemist for more medd so shall get some epsom salts never thought of thst.i do have gels and heat pads which help slightly.
Judith I was diagnosed 8wks ago after nearly 3 years of tests ,pills and my persistent nagging my Gp. I also have osteoarthritis in my hands which along with tingling and pain in them, I have warm baths, use tens machine and handheld pain relief. I'd love a night sleep. I've tried to read up on it but it difficult to concentrate etc.
At moment my feet and hands are swollen up with tingling and numb. I'm not sure if it's another symptom,or ? If anyone could help I be grateful.
I also try to find out if there any groups I can join,but nobody has replied,a lady ask where I lived by emailed me I replied but not had a reply back. I'm in Buckinghamshire but could also do Watford area.
Bear with it the pain is awful until your prescribed medication 😁
Hi Sandra, most hospitals offer a pain clinic service which you get referred to by your GP. They then offer CBT, usually in the form of a group of six people and a specialist nurse and a psychologist who talk about what is pain, how pain message is sent and tips on coping. I was lucky enough to be on an eight session course geared towards fibro, most are general pain. But you can ask when referred.
Once that is done there is a monthly informal meeting held away from the hospital, ours is in a community centre. Maybe go this route or call hospital and ask to speak to pain clinic. Mine is in Frimley, Surrey so no help there!
Best of luck Patrick.
judithanne1967
Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read how the hospital made you feel and I sincerely hope that it does not ruin your faith in all medical professionals as there are some good ones out there.
I was wondering if you had a good relationship with your GP? If so it may be beneficial to book another appointment and discuss with them exactly how you are feeling? There are other medications that your GP could prescribe for you whilst you are awaiting your referral appointment.
I want to genuinely and sincerely wish you all the best of luck and please take care of yourself.
All my hopes and dreams for you
Ken
Thanks Ken
I have a lovely dictor and she is trying to help.
Good luck 
Thank you for your kindness xx
hi guys, I have tried an Epsom salt bath, suggested by Greenpeace, it really helped . thank you for advising it. seen my doctor again and had more blood tests done , she was concerned about one done in hospital showing inflammation, bit confused by it, will see what tests say. also given amitriptyline to take at night and codeine phosphate for the day, it seems to be helping but feel so tired all the time and spaced out, memory is shot to pieces and have no appetite, all I want to do is sleep.hope everyone is coping as best they can. love and gentle hugs xx
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