Hi all

My name is Jan. I was diagnosed with FM a good 15yrs ago now, although I was told I had RA & even treated for RA for many yrs & it was not until a few yrs ago that I sent for my own medical records & saw it in black & white "This Lady has Fybromiagia" for many years I was told by my partner..your alway ill. Told by many different doctors & even a specialist doctor that I had nothing wrong with me & remember thinking I was either going mad or had a life threatening illness & they just were'nt telling me. I was told I was depressed and constantly offered anti depressants but the only reason I was depressed was because I knew I had something wrong with me but nobody would acknowledge it.

Now finally I know I have nerve damage in my back & some arthritis & fybromyagia.

So yeah thats me. In pain most of the time and although I am only 60yrs old I feel like im about 80 or 90. Struggle to walk far & have to use a stick which also gives me pain so dont know how much longer i will be able to walk far. Well I now feel like im writing a book lol so ill finish here. Happy New Year to all & hope its a good 1.

38 Replies

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  • Hi Jan sorry to hear you have struggled so long to have to find out yourself. The Diagnosis of Fibromyalgia. Similar to you long time before diagnosis. Have Disc problems with my back effecting Nerve in leg & foot. Sympathise also use Cruthches. Walking not at all easy!! Sending positive thoughts. Nice to share in this site. All the best for now. Jan. XX

  • Thank you. Yes it's a good site & good to be able to talk with others with FM. I was thinking maybe I would be better with crutches than a stick but I have a lot of pain in my shoulder & think it would probably make it worse.

    I now have a painful wrist & lump in wrist from using my stick. I do use a mobility scooter on occasion which is brilliant but don't want to use to much because I think I do need the bit of excersice I do get from little walks but am toying with the idea constantly because I can't walk down 1 aisle of the supermarket without being in agony.

    It's hard to know what is the best thing to do sometimes. Oh well! What will be will be lol

  • Try an gutter crutch, it means you aren't having to grip as hard with your hand as it is an L shape rather than straight down. I have the same problem, I have a gutter frame

  • For some diagnosis is a heart sink and for others at least you know what your facing.

    I try and be the latter finding as much information as possible for my own understanding a little less in the dark alone with support from the community here.

  • Yes Ian thankyou. It was a big relief for me to be honest. I was able to look up all the information on Fibro & for the 1st time in 20 years know what was wrong with me. I wasn't going mad & i wasn't creating all this pain psychologically & all the strange symptoms & ailments I have had all these years had a name

    So yeah, it was like a massive weight of my shoulders & finally lifted my depression which was another major factor for me.

    Because I had told the doctor, I was depressed because of always being ill & not knowing why or what was wrong with me & the depression wasn't making me unwell, the being continuously ill was making me depressed if that makes Sense lol

    The community is great, I love it.

    Jan

  • Depression is a secondary with many chronic illnesses having support with coping skills is normal in cancer, heart disease and many others without any mention of it removing the primary disease.

    With mixed up memories we probably only make sense amongst those that have shared similar experiences and can understand what we try conveying in typed messages :-)

  • Oh I feel so bad for you, poor you. There is nothing worse than not being taken seriously or believed and in your case, the diagnosis was made but ignored for some reason which is terrible. Thankfully the work of FMA UK and HealthUnlocked raises awareness so that the condition is rightfully recognised and support is offered to the likes of us. We can help by educating others whenever we get the opportunity to do so. Good luck to you Jan and all the best for 2016. x

  • Hi Jan it's hard coming to terms with our bodies not doing what they should , I am being given councilling to come to terms with what's happening to me as I have faught it for to long , and am getting to point GP is telling me less walking more scooter , I bought myself forearm crutches big mistake took the pain from my wrists to my elbows and shoulders , ask to see a physio they may be able to help you , get in touch with social services ask for a assessment , I am 54 th in the next 3 weeks , went from my body looking and behaving like a fit 30 year old to now I feel 70/ 80 it's tough , the best medicine is laughter and I have found my humour again here on this forum , the best advice I was given was two years ago and that was be kind and gentle with my self , it's been hard admitting my limitations , but I have also found an inner strength by admitting them ,

    Hugs

    Chris X

  • Hi Chris,

    Thank you for your comments here-this has definitely struck a chord with me as I feel very similar about limitations.

    We are similar age as I'm 51 this year, until two yrs ago I was an active Cub Scout leader-enjoying fun times running about with the children; night hikes, camp, wide games and so many different things.

    Now my life couldn't be anymore different-it is a complete world away from that active life.

    I was pleased that I got several adult colouring books for xmas but it also reminds me of what I can or cannot do now.

    Sometimes I have no clue on my own limits, I get carried away enjoying myself, enjoying the company, basically just enjoying life.

    Although it's a very rude wake up call when I spend the next few days recovering. Like you I think I'm too young for all these changes in my (young'ish) body, it's any wonder tears and depression are my best friends at times.

    So sorry to sound 'woe is me' just stating facts.

    Thanks for 'listening'

    Best wishes Pea 🌻

  • It's ok , I also have taken up colouring again used to love it as a child , find myself doing it in middle of night when I can't sleep ,

    And yes I have tears too! I also get carried away , but still pace but even my pacing is to hard on my self , the positive is that it's not cancer , I believe my grandmother had this , and without medical help other than addictive pain pills lived to be 94 , I have support of a good dr and my children , I live in a small community and everyone new how active and helpful and hard working I was so unlike people living in a city where your not known I get support,

    Which helps the place I haven't had it was when I was assed by Atos for my pip , first time round it took 18 months and a fresh claime but know I have full support , but the toll was my health ,

    My Drs first told me they would get me well so I could work again,

    Now they tell me it's about quality of life !

    I have a council with the same issues as me which is MCTD and fibro , I get most of my issues from the fibro but I also have organ involvement . At the moment it's all about being stabilised

    ,this site has been my saviour , the people here are kind and understand , nothing you say won't be not understood , and they have taught me I am still the same person and I can still laugh ,

    And that comes across when I do venture out , l still smile I of course do have down days and I do cry , usually at night I was living alone till 6 months ago ,but my 29 year old daughter who was unwell herself decided to move home me to support her emotionally and her to support me physically , on the whole it's worked well , if I am having a cry she's there now with celery,water, peppermint tea and a giggle , I am blessed .

    Big hugs to you , you don't have to join in just read the story's of others if that all you can manage , but you will find this forum helps , next time you see your GP ask about a pain and fatigue clinic , mindfulness it will help you if you have an open mind ,which it sounds like you do .

    Hugs again

    Chris X 😊

  • Thank you so much for your kindness and honesty.

    Catch up again on here, sometime soon. xx

  • Hi Janet28

    I sincerely hope that you are feeling as well as you possibly can today? Welcome to the forum and it is wonderful to make your acquaintance. I have pasted you a link below to our mother site, FMA UK which hosts loads of useful Fibro information:

    fmauk.org/

    I am so genuinely sorry to read of your suffering and struggling and not getting anywhere with the medical establishment for so long. I sincerely hope that you can now find some resolution and relief to your health issues. I want to genuinely wish you all the best of luck.

    All my hopes and dreams for you

    Ken :)

  • Thank you so much for your lovely message & everyone else that's replied. I wish I could say I was feeling well today because I absolutely hate saying to people, no I'm not alright I ache all over, ive had an aweful sleep & i feel like crap lol. But hey ho at least I'm not the only one.

    As shadow Walker says I think I will get in touch with social services for an assessment. I was advised to do this a couple of years ago but because my daughter helps me so much and I have now moved in with her, I never got round to it but yeah, think I will do that.

    I do go to physio at a small local hospital but to be honest I haven't had much help from them. I went to them recently with wrist pain which was chronic and wore a splint that I had brought myself because any slight movement was agony & the physio told me only wear it for an hour a day, which would have meant me being in agonising pain for 23 hrs so as you can guess didn't take that advise lol. After a very brief look at it, told me there was not anything drastically wrong with it, i.e. it wasn't broken or anything, which I already knew, he told me keep it moving as much as poss.

    I've had severe shoulder pain & could hardly move arm for a year. Tennis elbow with golfers elbow & not able to move other arm for months, the list goes on really and never found physio to really help me much. The pain seems to run its course then gets better as quick as it started.

    Anyway sorry here I am writing another chapter haha all I wanted to say was thankyou all for your lovely messages.

    Jan

  • Hi again Jan

    I am so genuinely sorry to read that you are feeling so awful, and please take care of yourself. Getting an assessment by Social Services is an excellent start and hopefully they will be able to assist you in some way.

    Take care

    Ken

  • We all need agnoligment. How much to send for Dr records. Good luck on this very hard journey

  • Thankyou ☺I paid £15 for medical records which were sent in the post to me and went back to about 1991 which had proof of all the injections I had previously had in my thigh because difficulty walking and letters of referral back n forth from doctors & hospital and mention of fibromyalgia in 97 i think.

    It was very useful when i could not work anymore 5 years ago and had to provide proof of my health situation. So I was able to stop working due to I'll health and able to claim my pension and help with benefits,

    Jan

  • I did not know this , I had been complain about my hands for years but the bloods always came back fine , it shows a history , thank you I may well request mine thank you again Chris 😊

  • Oh bless you hunny, that is just awful. I was ill like you for about 5 years. Thought I was going mad and nobody believe me. I have had FM/ME/CFS OA and all the other guests that come with it all. They say it doesn't get worse but over the years mine has got considerably worse my walking balance pain sleep and many more HAS got worse. Hope your not in too much pain and discomfort and wishing you a happy new year x

  • Hi Jan, I had exactly the same problems as you, was diagnosed and treated for RA even ended up I. Hospital having a blood transfusion as it had caused me to have severe anemia, then was told the RA had apparently burned itself out and I had Fybromyalgia, also osteoarthritis in my joints and to top it all the start of osteoporosis ( thinning bones). Like you im in pain from one thing or another, it's so hard to deal with constant pain, I get the wrist pain and wear a support and like you told to keep moving also shoulder/neck you name it, I found a chiropractor very good, she said it was my trapeze muscle and touch wood after only four sessions I've not had trouble since.

    a few years ago I could go for dog walks with my OH for an hour at a time but this has gradually reduced and know I can manage about half an hour before the pain and fatigue kicks in and I have to stop and sit for a while, but I'm not giving up I'll go as long as i possible can

    Happy new year to you too, and hope you will enjoy the forum 😃

    What doesn't kill you makes you stronger

  • Awe Arymretep thank you for your message, I'm sorry you have had similar experience but it's also good to hear I'm not alone.

    I've never tried a chiropractor so that's interesting maybe I'll investigate that one but only trouble is the pain is so bad sometimes I can't bare anyone to touch me. I find it hard to have massage at times and it can make pain worse.

    I have a small dog that I sometimes take for literally a min walk to end of road, if I feel ok but I've had to teach him to obey me because can't have him on lead as he pulls to much.

    The forum is great & a very Happy New Year to you too ☺

    Jan

  • Hi Janet, so sorry you had this all this time, and struggling . I hope you get the right Meds now . And Chastise your Doctor for not picking up on this.good luck.xx

  • I am sorry you've been treated so disrespectfuly.

    I have fibromyalgia, along with tendonitis bodywide, arthritic upper and lower back, and knees, oh yeah and hands. I also have diabetes and neuropathic pain. I am 62 going on 100.

  • Hi Vonny thanks for message. Yes I seem to have forgotten half the things that I've been told is wrong with me over the years lol. My feet are very painful also. I was just saying to my daughter that when I stand and walk, the first few steps all the bones in my feet crack & crunch & it feels like I'm walking on little sharp stones.

    I could not imagine what it's like living with diabetes too, poor you.

    I know when I have had any other illnesses it has made me 10 times worse because of the Fibro so it must be really difficult for you

    Love n light

    Jan

  • This is so similar to what has happened to me and it seems to happen to so many of us. In March 2014 when I asked Rheumatologist at my first appointment if I had fibromyalgia I was told this was the least of my worries and I was started on DMARDs for RA. In April 2015 after several different drug trials and bad side affects and my job loss through ill health I was told I cant have RA as the drugs haven't worked and that I "only have osteoarthritis and fibromyalgia nothing can be done" (Rheumys words). "ONLY have osteo and fibro"!!!! I was discharged from Rheumy and I have been banging my head on a wall since trying to get someone to listen and some help. All I get offered is anti depressants and gastric band surgery but nothing for the pain and fatigue or help with my cognitive problems. I cant even get the pain clinic to help because they want me to see Rheumy again first so round in circles I go again. Its enough to make one depressed. Lol. Gentle hugs Joolz.x

  • You can ask for a second opinion from another rheumatologist , ask you GP for another referral , if he won't referrer you get in touch with the NHS omnibus man in your area you'll find him on line , the Drs and health service hate them it usually only takes one phone call from them to sort out any issues patients have to remind , the health service individual they have a duty of care to you.

    Good luck

    Shadow X

  • Thanks Shadow. When I was discharged from Rheumy in April 2015 and my GP wouldnt re refer me I complained to PALs who arranged a meeting with the same Rheumy who discharged me and she agreed to see me in 6 months after tests but that was 9 months ago and I haven't heard a thing, so I went back to GP and he wrote a letter to the Rheumy who originally diagnosed me to ask her to see me. I have an appointment 18th Jan but have just learnt that she is retiring very soon. I have waited for 2 years and contacted them lots to see pain clinic regularly and they make excuses like "lost notes" "person dealing with me is on holiday" etc etc and now they wont see me until Rheumy have sorted out medication? I would just like someone to listen to me and maybe properly diagnose me and advise / help me without thinking it is in my head. sorry ranting again. Joolz.xx

  • Make sure when you go you take someone with you like an advocate get as much info as possible tell them what you have been put through and ask if she can recommend if she is retiring a sympathetic consultant for you ,is my advise will try and message you tomorrow, ask about a pain and fatigue clinic as well , I have some info on it dective Tim sent me will post it next week after the festivities are done ,

    Big hugs I wish you a pain free 2016 and a better year all round ,

    Hugs again

    Chris xx

  • Thanks Chris. Wow didn't expect anyone else to be still awake. I am usually up at silly o'clock. thanks for the support. Big gentle hugs back at ya and hoping for health and happiness for 2016. Joolz.x

  • You'd be surprised how many of us are up most nights, should stay away from blue screen ,really but just coz I know what not to do doesn't mean I always take my own advise, especially when grumpy as I have a bug as well ,

    LOL

    😝

  • Sounds like me good at telling others not to but then do it myself. I blame foggy brain. It makes me forget what I'm supposed to do so why not forget what I'm not supposed to do! (does that even make sense?) What have you called your pet bug? lol.

  • It's un printable on here , but all under my roof have been bouncing from bug to bug for about 6 weeks , would love just to be dealing with just my chronic conditions, the girls moaning like hell about how Ill they have been and saying how well I deal with it but ,even I have had enough now 🙁

  • I think fibro makes us tougher externally(although it doesnt feel like it sometimes) If you are like me I put a front on and people think I am coping when inside I'm screaming. Hope you are bug free soon. Best wishes. Joolz.xx

  • We're all the same , aren't we ,

    Going to try and sleep now ,

    Hugs

    Chris.

  • Hello Janet28, you have shown determination to get the right diagnosis and patience to continue with the doctors who would not tell you the truth,,,,good on you for all that....I hope now that you have your notes and got to the bottom of everything,,and seen it written down you can rest a little and get some better help,,,, I hope this site gives you good help and information to help you, and that you can now get better targeted medical support and treatment from your gp, and other consultants you have to see,,,,bravery and determination you have at your side,,,,ttfn from Karen.

  • Hi Janet28

    It sounds like you have had one hell of an experience getting diagnosed. I cannot believe they let you struggle for that long not knowing what was wrong. I admit i requested the help of a senior partner within my old GP practice and i did eventually get the help i needed. We moved house last year and i had a similar problem with new GP practice. I just happened to get an appointment with the senior partner there over the Christmas period and he has put me on stronger pain medication, and has said that if that doesn't work i will finally be referred to a pain clinic. Finally! I felt someone had listened for a change. I came out one day in tears because the doctor i saw was so dismissive. You will be given lots of advice and support here. Everyone is lovely and knows exactly how you feel. Take care xxx

  • Ahh thanks so much for your kind words. I must admit ive left the doctors in tears so many times over the years ive lost count. Ive got a lovely GP now though. I have recently been referred to pain management and the guy ive seen twice has given me numbers to get help with weight loss, Tia Chi & sleep management seminars. I just think they have this little agenda of giving you advice, writing you a letter & thats there job done. Im left with phone numbers & thinking I dont know if I can even get out of my bed to go & sit & listen to someone giving me advice on sleeping lol.

    I have practiced yoga over the yrs but stopped because it was causing me pain. I do try & stretch & excersize as much as i physically can when not in pain & i dont really need anyone to help me lose weight. So really all in all the whole thing seemed another waste of time.

    He told me there is a problem with my hip but no point in having an xray unless I was going to do something about it & ppl.with Fibro dont cope very well with operations so could possibly make me worse.

    So now xmas done with Im sitting here thinking where do I go from here, still in agony.

    Sorry that sounds so negative but its how I feel today. Its all such a battle. I am going to go back to my GP as soon as I can though.

    A very Happy New Year to you ☺xx

    Jan

  • Hi jan i really feel upset n angry wen i read posts like urs wer th doctors, whom we r supposed to trust n rely on with our health, ignore our cries for help n leave us to suffer, then on top of that they know wats wrong with us n with hold it from us? Y? Wat do they acheive frm doing this?. Myself after going bak n forth to doctors was told 'nothing rong with u all in ur head', i had to go private, he wrote to my gp that he thinks its fm i shud b referrd to rhumy n thyroid n other tests should b don, including for sleep apnea bt my gp stil ignored all of that, let me suffer for 2 mor years. Finally my feet n ankles wer so swollen i cud barely walk, after loading me with diuretics only wen he saw how bad they wer he referd me. like urslf alot mor to my story bt i wil stop here, i really feel for u, wat u hav gon thru n stil r going thru, wish ther was a magic wand we can wave wer we cn make it stop. Only little consolation is u r not alone, we all understand wat we all r going thru. Been up most of nite, dont no wat to do now, everyones busy with their lives, i feel helpless, useless n isolated at this moment.restricted by health issues in wat i cn do.same like most of us. U r not alone babe be strong, we hav to battle on. My healing warm hugs to u.x

  • Aww thanx so much for your lovely message. Sorry you suffering too and your story sounds just as much nightmare as mine. Some doctors are just so arrogant and stuck in their old school, pompous ways its infuriating.

    What ever happened to so called 'Bedside Manners' lol some of them have a job even having eye contact with you, to busy trying to figure out how to update records on a computer screen before the next patient.

    Now days that surgeries have to handle their own budgets it's cheaper for them to say there's nothing wrong with you because it cost them to much money to give you lifetime medication.

    I must admit I have now got a really nice doctor but iv been through a lot of really bad ones.

    I think for many of them its power, that's the only explanation because as you say, what is to gain from their behaviour ?.

    I'm so sorry you feel like you do & please don't think or say your useless because I bet my bottom dollar your not. You made me feel better by replying to my post so I'd say that is pretty useful, well was for me. ☺

    I do know how isolated you feel because I have felt like you but I'm very lucky to live with my daughter & she keeps me going really, bless her. She is single mum, has 2 boys, 1 has Torettes & other 10 year old has mild Asperges & ADHD & She has a 12 yr old girl that she has court order to let her live with her because her dad was neglecting & abusing her & her mum has severe mental illness. She has her own business so works full time and she then looks after me a lot. I think she is super woman lol don't know how she does it all.

    Your not alone & always send me message if your Fed up honey & thanx for your healing hugs, sending them back right now.

    Luv Jan xx

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