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Jonann

New member
Joined
Dec 30, 2013
Messages
2
Diagnosis
07/2013
Country
UK
State
Tyne and Wear
Hi Everyone ,please bare with me as im knew to this but i just wanted to tell you a bit about myself .I was recently digonosed with Fybro in the summer of this yr after yrs of going back and forth to the Dr's many scans even at one point them thinking i had a blood clot in my legs . It came to boiling point ( excuse the pun ) when i felt as if my joints had been set alight i was in tears with every Dr i came into contact with asking them what was wrong ,they said i was depressed the list went on .....i knew it was what was going on within my body and noone seemed to know what was going on was making me depressed . Then one evening i was looking on the internet regarding hypo mobility because my son is H/F Autism and was always complaining after any exercise which took a toll on his joints i.e writing and sports at school .....a lady on the forum was saying she was having a bad FYBRO DAY and i thought what is that i had never heard of it so i looked it up and a light went off in my head .Everything she was saying i had been suffering with on and off over last 10 yrs ...i went back to my Dr and explain what i now know what i think i may have .how i came across it and so on ,what i didnt expect is the treatment that i recived at saying this .It was shocking to say the least my Dr who iv lost all respect for thought i had just made it up that i was self digonosing myself and denied this is what i had stating it was something eles ,my words as i was usered out of her office was this is not living i was so upset ...i came home and phoned the Fibro help line and was in tears i was so distressed they told me to ring my Dr up and request to see a Rheumatologist which i did she refused saying why they will only say what you have said ...i stated i needed to see one to see if this is what i indeed had again she refused i then went to see another Dr in same practise she also refused and read out what the other Dr had said that i self digonosed myself ....i was upset and said this is not the case that i had read up and seeing the symptoms were the same and i just wanted to see someone who was aware of this condition to see if it was indeed what i had after many yrs of being in pain ...she also refused ...then that evening i was in so much pain which i now believe was a flair up i phoned the emergency Dr's the nurse i spoke to was so understanding and said i needed to in the morning demand to be referred to see a Rheumatologist that was FYBRO TRAINNED she give me his name at the Hospital that i would be attening and to give the name to the Dr ....i said they won't she said tell them i told you that you must see this guy or one of his team ......So i phoned my Drs that day and seen another Dr again i was met with shocking treatment from this guy who calls himself a Dr he at one point said i would have to pay till i said i would spend every penny on my creadit card and then declare myself bankrup ....by the way i live in England where it NHS ...SO DONT NO WHAT HE WAS GETTING AT THERE in the end he give me a refurral form and said phone up yourself you might get lucky and get to see the guy you want ...........So this is what i did and i Thank GOD that though i didnt get to see the guy but one of his team who was the lovest of men who said sorry for all the treatment that i had recived trying to get to see the team and that he would write to the Dr letting them no about the condition and that it is indeed a very painfull condition and is a condition .........this Dr called me in when he recived the letter no remorse thou but he has since left the practise but i got digonose on the spot with Fybro at the Hospital ...so now im having to learn how to work with it instead off fighting it which i had been doing my diet has all had to change im trying many herbs natural stuff to see if that helps ...as i write this i have two ice packs on my legs ........What i will say is it is a horrid condition and those that truly have it my heart goes out to each and everyone ...iv since learned not many Dr's BELIEVE IN THE CONDITION SO THAT CAN EXPLAIN THE CALLOUS WAY IN WHICH THEY TREATED ME leading up to my digonose ......all il say is i wouldnt wish this on any human being or animal for that matter it takes over your whole life i now have to tick boxes as such in what i will do that day because i can be floored for days if i dont every day is a challenge the tiredness alone plus feeling as if you have never been to sleep many many things really ......im sorry its long but what i would really love to know now is what things help you all what things can cause you to have flair ups any advice would be greatly recived ....and i so thankful iv found this forum cause knowone knows what its like unless you have lived with this condition by thanks again for reading my post Jo xx
 
Hi Jo welcome to the forum, sorry about the way you were treated, most of us have at some point had similar reactions from Dr/friends/family. This forum is very good for tips on how to live with fibro but you have to remember that everyone is different and what helps one may not help another. We just have to keep trying things to find what works for us. What helps me is rest/proper diet and learning what my limits are. When my body says enough then I listen and rest. Weather seems to affect a lot of us as well so try to keep your self warm by dressing in layers when going out and using a hot water bottle or heated throw when at home. Keep posting and reading and hopefully you will find some answers on this forum.

Tina
 
Hi, Jonann, and welcome. Trying to get the medical community on board with the fibromyalgia diagnosis can be extremely frustrating. I have found I have had better luck with nurses being brave enough to say the taboo diagnosis of fibro! It was a nurse who first told me about it. And I have run into doctors who deny there is any such thing as fibromyalgia. I told my family physician that my neurologist thought I might have fibromyalgia, and that is when he was finally brave enough to say, "I concur with that diagnosis." It is a trip isn't it? I don't know why there is such a stigma associated with it?
 
JonAnn,
Welcome. Please read through the posts on pain management. You mentioned using cold ice packs on your legs. I would suggest you try using a warm blanket that you heated in the dryer and place that over your legs. In the winter try wearing knee socks as they help keep your lower legs warm and offer support and prevent cramps. In bed throw an extra blanket or throw over your legs and feet. I think if you switch to using warmth instead of cold you will feel much better.

I am sorry you had to deal with such cruel and rude doctors. I hope you are doing better now. By reading the posts on the forum you are sure to gain plenty of coping skills. Glad you found us and we understand the frustrations of dealing with doctors and managing symptoms of this crazy illness. You are not alone anymore! :)
 
Hi all, thanks for the welcome ,still getting used to how to navigate the page .Thanks for giving me tips on how to deal with Fybro ,and it sure is great to talk to people who understand this dreadfull condition .Yes i still get met with its all in the mind and the Dr's are always pushing different type of antidepressants ....for me this is not a rote i want to take ,but thats just me .Im looking into other means of getting to grips with helping the pain as in foods and herbs . Isweed i will try the heat thanks ,for me i just felt my joints are on fire and need cooling down .I have also started to add fish to my diet aswell as eating fresh pinapple i found last evening i cut two slices and ate before bed and the pain eased abit ....I think its trying out what work and what doesnt as our bodies are all different to what helps us ........I will keep reading and picking up tips .its a great Forum and great to read from people who have same condition thanks again
 
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