Frustrated!: I started feeling chronic... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Frustrated!

inpain69 profile image
7 Replies

I started feeling chronic fatigue and pain after a traumatic bereavement and horrible divorce 5 years ago. I have vistited my Doctor so many times and I have had blood test and an X-ray on my neck - results NORMAL

I had knots in the shoulders that progressed to pain up to the neck and this would then go to the shoulders and be stabbing or a dull ache throughout the back too. My general symptoms are stiffness in the neck, back, shoulder and hips and general pain all over, sleepless nights, groggy head, IBS, I only occasionally have sunburn feeling on the skin in one area, numbness in one finger and migraines, restless legs and tinnitus.

Just recently, I have experienced occasional heart palpitations, (ECG test was NORMAL), white flash in corner of right eye most of the time and the latest was almost blacking out whilst driving (twice 8 weeks apart). So back to the Doctors again. I have just had blood tests which came back NORMAL this morning!! GRRRR! I know Fibro doesn't show on blood tests and I was tested for Rheumatoid Arthritis so that rules that one out. It was mentioned a brain scan and 24 hour ECG heart monitor. So, I have to go back to the Doctor on Monday and ask yet AGAIN for this to be investigated as this help wont be offered freely!

I am so frustrated as I feel it is most definitely Fibromyalgia. :(

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inpain69
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Extremelygrumpy profile image
Extremelygrumpy

I have to agree you have most of the same symptoms as me except for the eyes.... Trying to find a good gp and then keeping hold of them seems to be a major struggle ... Mine has just retired and his replacement is awful am in the middle of changing surgeries...... It seems unbelievable you can be treated for fibro for over 20 years then a new dr takes over and tells you it's all in your head... Please don't give up as once you get a diagnosis there are meds to help.. Support groups in rl and online

Hoping for some positive news for you

VG XX

hiya dont wanna scare so please forgive me.but me and my partner have both c.f.s and fybromyalgia and the symptoms you have mentioned could be latter one.

ive been through this and spent years battling for anything.

once again i could be wrong but ask him if there is a chance.

you could have both.

may i just say that our life isnt over just coz he wlith with both illness but its much harder and slower than before.

dont take my word for this and if not seek a another doctor and ask him.x

I am so sorry that you are suffering so much. It does sound as if you could have Fibromyalgia from your list of symptoms so perhaps this is something you should discuss wit your doctor while you are there. You might have to have more tests to rule out other conditions first though. Most of us with Fibro have had endless tests and scans before getting a conclusive diagnosis. You should not have to suffer so much pain so make sure that you are getting adequate pain relief from your GP. They should also be able to give you something to help you sleep. There is no need to suffer in silence. We all understand your frustrations on this site as most of us have been through it ourselves!! Take care and let us know how you get on. Jane x

littlejan profile image
littlejan

Hi

Sorry to hear you are suffering, I have had fibromyalgia for 12 years now and believe it happened after my mum died, Same as you all things have come back normal but at the time the doctor refered me to a consultant for Fibromyalgia, and he pressed 11 places on the body and if you have pain is a certain amount of them with not much pressure then you have it, Also I have been given Amitryptiline (cant spell it sorry) 10mg, which helps with the sleeping. I know I dont have it as bad as most people but I have the stiffness, brain fog and pain in most of my neck and back and top of legs but I have decided to do more exercise, building it up, yes i knwo it will be a vicious circle of doing it then hurting, but the pain eases slightly, just to give you some hope and anyone reading this, I decided to go to the NHS choices couch to 5k in 9 weeks, starts jogging with intervals, so at the beginning I couldnt even jog for 60 seconds but I have now just finished the 9 weeks and I can jog 4.88km, nearly there, and yes I do hurt alot afterwards but im sure it gets a little easier. Im not saying at all that you should do this, because i know alot of people cant even get out of bed but just wanted to let you know what you can do if you wanted to. Also I find massages are good to for short term.

inpain69 profile image
inpain69

Thank you everyone for your comments and kind words.

I moved from the west country to London last year and spent many times telling my Doctor what I thought I had wrong with me and now I have to explain it all again to the new one.

I have had muscle relaxants given to me in the past which did help but I had at times had a side effect of feeling skittish (very restless) which was horrible! The new relief Doctor this time would only gave me a weeks supply!! :( And I forgot to ask my Doctor the for pain killers last time I went as I had so much I needed to say about the symptoms!

I hate being like this as for 15 years I was so physically fit, running, cycling, circuits ect now for the last 5 years all I do is walk the dog as physically/mentally I just cant face it. :( I have just made myself get back on my bike in the last week but I pay the next day.

I will keep you posted on my outcome with the Doctors.

xx

keep at it and know that all these tests are a good way of proving your healthy .. in a sort of FMS way its good to check all other things out anf they you can know 100%

keep plugging good luck gentle dyslexic hugs

inpain69 profile image
inpain69 in reply to

Thank you Lexie for your comments. I will keep plugging on with it because I know how I feel. But they dont!! xx

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