I have Fibro and thats orful but i also have an huge issue sitting down. Long story but started in my sitting bones when i was put on meds that caused extreme restlessness and the pain continued and grew to where i can not bare to sit down!!! I screamed and cried in my bathroom day and night and still do. I sit on huge ice packs that take the burning away but the pain is excruciating !! I want to go to sleep and never wake up!!! I finally had an MRI as this has been going on for 2 years!! But the MRI didnt show anything. I had lots of feed back from 1 of my posts but can not find them now an now i am even more be side myself and haven't a clue what to do. I cant take my life as i am in a mantel health rehab and there is no way out. I cant barely walk as i have excruciating nerve pain in my feet and i have nerve pain all over my body ++++++. My feet nor my head were scanned and now beside myself. Please can anyone shred some light on this?!! I need urgent help its the worst thing i have ever been through and i have been through a lot mentally and physically as a lot of us have. Thinking of you all and in desperate need of help!!
Please please help!!: I have Fibro and... - NHS England: A Ca...
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Please please help!!
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I am willing to bet the problem is in your back, no one can find the cause and then everyone acts like there is no problem and it must be a mental health issue.
Have you been taking any antibiotics that have been linked to neuropathic symtoms? Ciprofloxacin, Nitrofurantoin for UTIs?
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Thank u SOOO MUCH FOR YOUR REPLY!! I have just typed along reply but its finished!! :0( !!! Cant do it all again right now as in to much pain. I haven't taken antibiotic's for years before this happened. My Fibro seemed to be down to an op on my toe after i broke it badly and formed arthritis on the joint , as i got sick after that.
My sitting bone pain started by rocking on hard surfaces due to the extreme restlessness and also in my feet causing nerve pain due to repetitive movement to. Sitting area seemed to have the same symptoms as Isiogluteal bursa or bursitis!! But is now excruciating!! Unbearable!!I cant bare it its the worst constant pain i have ever been through.
Yes they do seem to think its all in the head. I know its not and have followed the progress for 2 years. I have never cried so much in my life.
I did find something to my symptoms i have Isiogluteal Bursa/bursitis. But Dr says it not that as nothing showed up on MRI. But it has to be something!!
if there is anyone that can shine some light on this and suggests something i can ask or look into that would be so valuable to me!!! I did find something and it doesn't show up on an MRI but i lost the name of it. Got to be somewhere but i research still goes on till the end. I can not be left like this. However it is effecting my back as i have arthritis in my back and had it for about 3 years.
Does anyone know if the bones show up in a MRI. Nothing was mentioned about my arthritis and i am baffled!! I think its right that the bones show up black. So if someone had a broken bone or arthitis would that show?
So sorry for the longitude of this i could go on but my body will not allow me to.
Hope you have a better day than yesterday to all thats going through bad times!!!xxxxxxx
Hi, I share your pain as I have been battling my feet/ankles for 23 years and my back for 7 years. Finally after seeking various second, third and fourth opinions and an overseas appointment with a consultant abroad, I have finally been given the correct diagnosis regarding my back. I have a fractured coccyx but every MRI that I had showed nothing wrong with it. I also have curviture of the spine, spina bifida, collapsed discs, lumber lordosis, arthritis and a collapsed vertibrae. The overseas clinic also detected that I need a hip replacement. The left hip is completely knackered and I now have OA in the main joint and the right hip is just starting to go. The overseas clinic were far from being impressed with the way that the NHS has just basically fobbed me off, misdiagnosed me twice and sent me on my way. The overseas clinic were also far from being impressed that it has taken 23 years to get my feet/ankles sorted. They said, what the hell is going on in the UK as they are starting to see more and more people all at their wits end with our health care system and not getting anywhere let alone being given the correct diagnosis. I said, they had also kept telling me that i had fibromyalgia but it isnt that at all. I said, the times i was told that it was all in my head was anyones guess. It got so bad at one particular time that i started to question myself. I thought I was going crazy but always knew that the fibromyalgia was being used as a cop out to get me out of the surgery and because no one wanted to thoroughly investigate. Also, if surgery/specific treatment is going to cost too much, you dont get it on the NHS. In the UK they are saying that at 48 years of age that i am too young to have a hip replacement as they only last 10-16 years. They have offered me a cortisone injection which will soon wear off even if it works. I will be back to square one again. When i said to the consultant overseas when he detected everything that was wrong with me about being too young for a hip replacement he said what the hell has age got to do with it. He said, he gets kids and teenagers in the clinic and said if you need surgery you need it. He said my hips arent helping my back. I said the pain in my back, feet/ankles and my hips is excrutiating. I said, the times i have literally vommited on the laminate due to the pain is anyones guess. I said, its not just the pain its the mobility problems too that drag you down. I told him about chronic pain management and I said its another ridiculous department within the NHS as im yet to speak to anyone that has actually benefitted. I said, they ask you ridiculous questions about your pain on a scale of 1 - 10 and said they look at you gone out when you say try about 2,000 and above. I said, its just lip service and said people want action not someone sat behind a bloody desk telling you how to manage your own pain. I then said, its usually someone that isnt in agony that comes out with the crap that they do. The overseas consultant couldnt believe what he was hearing when i reeled everything off about what the so called medics have told me in the UK. I said, i try not to tell too many people and he said yeah i know what you mean, they would think you was making it up. Regarding my back, i was told by a rheumatoid arthritis bloke that he was in agreement with a previous gp that it was fibromyalgia and he then said, if i had my ovaries removed my back would be a lot better! I was sat there with my mouth open as i just couldnt believe what i was being told. What the hell does a RA consultant know about womens gynaecology. Yet again, i left the hospital distressed. The overseas clinic said they could help with everything apart form my coccyx and they said that for the coccyx i would probably be better at a different clinic overseas or somewhere in the UK. I got the flight back to the UK and managed to find a specialist that specialises in the coccyx and it also turns out that hes an advanced spine specialist/surgeon and he is due to remove my coccyx next week. Once ive recovered from that, he is then going to sort out the collapsed discs then once ive recovered from that, he will then sort out the collapsed vertibrae. Im disgusted with the UK's health care system and equally as disgusted that its taken 23 years to get my feet/ankles sorted and 7 years to finally get someone to take me seriously regarding my back and give me the surgery that should have been conducted from the outset. This is peoples lives. Regarding my hips, they will jsut have to wait until i have enough money to pay for the hip replacement as overseas quoted me £10,000 and the Uk have quoted me £12,000. I just havent got that kind of money, who has unless we can win the lottery. All i can suggest, Jess is maybe googling different clinics overseas or using the health tourism website as i feel sure that a hospital overseas will be able to help you. They will also diagnose you the same day when you have the consultation with someone. Even x-ray/MRI results are given to you when you are sat with the consultant at the appointment the same day. Here, in the UK you have to wait a few weeks for the result sto go back to yoru GP, then wait weeks/months to see a consultant by which time, you are jsut left in agony to deteriorate. I feel so sorry for you because the pain is horrific and this isnt living. Animals dont suffer like this. I also forgot to say, that the same day that i was at the overseas clinic, there was another lass who was from the UK who had been going around the NHS for 9 years not getting anywhere and she too was at her wits end. She was told what her problem was and was scheduled for treatment. She said it means paying but its cheaper where we went and said just to have a life the surgery/treatment is worth every penny. Some overseas clinics also let people pay in instalments if you havent got health insurance. I hope this information helps and i so hope that you get sorted and soon bless you. I send you huge hugs xx
Hi Lincs2
I have just notice your post and i am 48 but in my head 21!! But my body is so crippled with pain i sit on my ice packs in my room most of the time. I have no quality of life. i will get back to you as i am in to much pain at the moment but i appreciate and totally agree with your response. I have so much wrong with me i can barely walk but no one can see what i feel can not just be described as pain. I gone in my legs all sitting area and hips thought i had Isiogluteal Bursa/bursitis re how severe it is sitting down, as have all the symptoms but my issues have been left just over 2 years and has now and grown and grown it to unbearable!! . But nothing showed up on MRI. So they see it like there is nothing wrong with me. I try to put a brave face on but its sooooo hard, people do not understand, i can not bare to go anywhere as the intense pain is to bad. Poor animals get treated better and have all the treatment they need etc. I have damaged my Coxit and believe i could have Coccydynia or similar, Nerve pain all over my body and i can not wear clothes and shoes i used to 2 years ago beside myself. I have arthritis in my back, slip disc which found out from MRI that its narrowed, severe nerve pain in my feet so i feel like i am walking on glass , pins stones and burning in my feet every step i take. I have injuries and pain all over my body and told i have Fibromyalgia i think to years ago. I also have mental health issues, memory issues, balance etc etc . i have lost everything and still people expect me to be happy and carry on and i cant. This is to much!! Know i said i was into much pain well in a lot more now so will have to got but will try and get back to you all. If i can follow this thread. I wish i could fix u all and make everyone have a life they deserve. The NHS have treated me badly as they look at me like i am stupid so i dont stand a chance of getting help and i am not mobile enough or have the funds to go abroad to get treatment. I hate all this as i wanted to get better mentally to help others and work again but in this situation where there is no way i can. Does anyone know if nerve pain shows in on an MRI or does it just show up with nerve conductor tests? I have so many questions but i know this isn't the place but where is when we are desperate for help. People expect me to life through all this but looks like the Nhs are against me to. Typing this has given me severe muscle spasms in my back. Sorry it i have mad e mistakes but i can go through this. i will how ever get back. Had to go over the mistakes to as to bad to send :0 ( xxxxxx
Sorry to hear you had to go abroad to get help. That's disgusting to see how much the NHS let people down when we have worked hard!!!!! Plus would continue to do so if we could get the help we need!!!! They make me so angry !! Now i amd many other have to explain to the system how we can not work due to the the lack of care and help. They have a duty of care and its clear they dont!!!!! TAKE CARE !!!!
Can someone please explain why this hasnt gone through to my emails? As it was by chance that i replied somewhat as i left the tab up on my last response?
so sorry i repeat myself as i can not retain a lot of things and here it makes it hard to remember what i have typed from the previous posts.XXX
Hi Jess, regarding the nerve pain, they can detext whats going on with the nerves if you have a neurophysiology test conducted. This might also help you - the overseas clinic told me that firbomyalgia can only be given as a diagnosis once every possible avenue has been explored and the medics are unable to fathom what's going on with a patient. So many GP's are telling people they have fibromyalgia when they dont. I also had a blood test done a few years ago for B12 and it turned out that my levels were so low that it had started to attack the pheripheral nervous system. Apparently once this happens it can mimick the signs of fibromyalgia, spinal cord degeneration and MS. I know someone who's husband had a back injury and one night he was screaming with pain so much that she rang an ambulance and he was rushed to hospital and he was admitted for tests. It turned out he was suffering with the B12 deficiency and they told him that had he have got this detected sooner they could have controlled his pain. The poor bloke ended up in a wheelchair due to the NHS not getting their finger out and doing the simple blood test. Someone else i know, her back started crippling her and a friend of hers is a doctor and he said go to your GP and ask for a blood test for the B12 deficiency along with the vitamin D deficiency. It turned out she had the vitamin D deficiency and after receiving treatment for it she is now fine. She said she had never experienced pain like it and she said she doesnt know how the hell she managed to get out of bed let alone get in and out of her car. She said every step was agony. Im not saying this is what's wrong with you but it might be worth calling your GP and asking for the blood test for the B12 and vitamin D. Regarding your coccyx the consultant i am under works for a company called one health and he is an advanced spine specialist/consultant. He is brilliant and he listend and took me seriously. Like you say, its the financial side of things and not everyone can afford to pay. His fee is £250 but he will then get you in on the NHS. He will give you a fresh MRI too. Its no life being crippled up and its disgusting that the NHS just leave people in agony. There are some really good consultants out there but the vast majority that i have seen have been dire, non interested and just in the health care profession for the money. I have always said, i dont care how much they get paid as long as they help people and treat them accordingly. If you dont get any joy with your GP i would also look into changing to a different surgery. You cant carry on like this bless you and youre the same age as me so its not like we are old is it. I really hope that you get someone to take your seriosuly i really do. If i think of anything else or see an article regarding health that might help i will message you. Again, I send you huge hugs xx
Hi so sorry i didnt get back to you sooner been a bit manic here with my memory fading and struggling to cope as i have no quality of life and as all women as i did love to shop and i cant everything has to come of the internet an due to the nerve pain in my legs i can not find some suitable soft legging. But then the PJ i found some times feel like i have hooks in them ripping through my skin. I will get back to you as can not propeley focus to go through your post right now. Pain is extreme. I did understand that i have read in the past that they should find the underlining cause of nerve pain etc . but i was just told striaght away that i have Fibro without them knowing everything i am going through. Beets me how the NHS work and the GP etc etc. Will get back to you. Take care for now and for all .x
Hi Jess, thats ok no problem about not replying sooner. Like you say, when youre in excrutiating pain you cant think straight let alone log onto the PC to go online etc. The B12 deficiency just sprang to mind and thought maybe this is what you have thats causing the nerve pain. Im not saying it is the B12 but its definitely worth getting it checked out. Dont let these so called health care professionals fob you off any longer. If you can manage to get to your GP and you get no satisfaction I would definitely look into changing your GP. I have had to change my GP several times because I wasnt getting anywhere with the previous ones. Having said that, my current GP was all ready to fob me off but I sat there and said no way am i leaving the surgery until you have heard me out as its getting way beyond a joke and i am sick of being sent on my way. I then said its not good enough and this is peoples lives. I was firm, direct and straight to the point. I was in the appointment a good 1.5 hours if not longer reeling everything off. Needless to say, once he started to see MRI's/Xray results and so forth his attitude changed immediately. Once I had reeled everything off he even agreed that it wasnt good enough the way in which i had been fobbed off, misdiagnosed and sent on my way. If I think of anything else that might be medically related to your nerve pain i will message you but at the moment all i can think of is the B12 and lack of vitamin D that may be the root cause of your pain. Sending you huge hugs 
xx
Sorry to hear about your condition. We have a few similarities in pain. This is my story 
I was very active person, was running my own business used to regular exercise but now I am completely different person. I was referred to spine specialist then Rheumatology department and also Physiotherapist. Doctor says MRI shows I have Degenerative changes and facet joint disease and also I have very poor core strength.
They asked me to do exercises for core strength. I don't understand why I have weak core strength as I used to do regular exercises. My weight is also normal.
I take Paracetamol, Naproxen and Co-Codamol but they don't work. Using toilet makes me tensed because sitting is more painful than standing.
Please someone has any idea how to get rid of this pain. I am so depressed. In my prayer I always ask God for painful early death because it is better than living with pain.
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