I was wondering who on here is diagnosed as PRIMARY FIBRO... and who is SECONDARY FIBRO..? Just out of interest Thank you x

[jolow]

Hi,The term secondary fibro is used when it is diagnosed after another medical condition ie arthritis either form as was explained to me when i was diagnosed as i have arthritis which may be why it took so long for fibro to be diagnosed as many symptoms overlap other illnesses.primary i assume is when one gets fibro without having other conditions as it would be first.Hope this makes sense x

[Hidden in reply to jolow]

Yes thats right sorry if I didnt word it correctly ~ I am interested in who has it as a first condition and how many of us as a second condition.. xxx

[SootyB]

In that case, I'll be primary fibro, as I have no other medical conditions apart from PCOS.

Sara xx

[SootyB in reply to SootyB]

Unless you count secondary to extreme stress ... I've got that!

[Hidden]

Just fibro that's enough poor people who have other things

[julieevh]

Primary? Secondary? I think I'm Tertiary ... or should that be Sedentary?

Julie xx

[Hidden in reply to julieevh]

Giggle.... well are you a primary or a secondary... My diagnosis is as a secondary as per my consultant as I had prior conditions diagnosed due to a surgeons blunder.. sooo its interesting to find out who has primary and what preceeded that diagnosis... I am trying to gather information to find out if there is a common thread.. maybe one that is known or perhaps one that has been missed... overlooked...x

[julieevh in reply to Hidden]

Yep I'm secondary - got more conditions than you can shake a stick at and Fibro is the latest

Julie xx

[irisjoy]

i am secondary too other condition from birth xxJ

[beth2]

hello I am secondary too take care love beth

[jolow]

Hi its jo again and i am secondary too as i had other conditions before fibro.x

[Hidden]

Okay.. so whats interesting that those who have answered this so far the higher is secondary.. so i am wondering what other conditions played a part in then manifesting fibro... ie trauma, surgery, virus etc... we need to do a study , a poll of somesort but not sure how to go about it on here... I possibly could collate the information ie... a chart.. one for primary one for secondary and then list other conditions under more headings.. ie trauma, surgery etc etc.. Thats if any of you are interested.. I am trying to see if there is a pattern of somesort... hugs x

[Celticmoon]

Secondary ~ and yes I believe stress, surgery (that went badly wrong), virus and other trauma triggered my fibro.

[Hidden]

Mine is Primary, started after mysterious undiagnosed abdominal pain. Jane x

[jayjay57]

Hi I am also a Secondary,

I was first diagnosed 5 years ago with Irritable Bowel Syndrome, then 3 years ago with Scoliosis (Thoracic Curve) and Left Pelvic Tilt, Facet Joint Arthritis, and Osteoarthritis in my Neck, then 18 months ago with Left Great Trochanteric Bursitis, Fibrocystic Breast Disease and Chronic Coccydenia then in May this year with Fibromyalgia, Costochondritis.

So all in all not doing bad am I, just wonder what next year will bring !!!!!!!!!

[Hidden in reply to jayjay57]

Bless you.... well think youve had enough on the health front so good must be coming your way.. x hugs x

[Hidden]

I had Osteoarthritis for five years before being diagnosed with Fibromyalgia. A year after this I was diagnosed with CFS/ME and RLS. Prior to having Osteoarthritis I had had over twenty years of intense stress and trauma in a violent marriage, so I guess as this wasn't a condition this makes me Secondary because of my Osteoarthritis?! Is that right?!

[Hidden in reply to Hidden]

Yes I would say secondary too.... secondary is when you already have a pre existing condition then diagnosed with fibro afterwards.. sorry to hear of your stress... totally relate and do feel that stress predisposes to a degree. hugs x

[goldwing]

I must be secondary as ibs was diagnosed about 20 years ago with stress then fms started about 17 yrs ago and then everything else just followed. Xx

[Maladjusted]

Secondary here. Had a lot of traumatic episodes in the 80's after which I got IBS, depression, panic attacks, and a few other things. Lots of rheumaticky/arthritis/sciatica diagnoses, but no treatment helped. Have had poor sleep pattern since late 70's. In 1994 diagnosed with underactive thyroid, 2000 with arthritis, 2008 with lateral epicondylitis in R arm - 2009 with medial epicondylitis in left arm - now in both. Metatarsalgia also diagnosed in 2009. Had surgery on right arm a year ago, which made the pain & stiffness far worse. Had eczema since age of 9, and migraine since age of 11, though only diagnosed when I was 16. Been getting lots of pain in various parts of body over last 5 years and had endless X rays and Ultrasound tests which showed nothing. Finally told it was all down to Fibromyalgia in June of this year.

[tracy09]

im second i have artheritu in spine however fms was diagnosed first but every time i go to the doctors its fms first and he put everything don to fms not any thing else ive given up asking for rferels as he dont do it

[Extremelygrumpy]

Ok sorry Lacey deleted my original post .... Of course I am not a primary fibromite I am a secondary... Was diagnosed shortly after a very traumatic op for endometriosis no pain relief and a wound that wouldnt heal...which I had had for 7 years before I had the op then developed fibro within weeks ...

Brain fogged/ brain dead But you are making me think back over 20 years when I find yesterday hard to remember

VG x

[Hidden]

Thank you, Thank you, Thank you ... to all of your responses, I am sending loving hugs to you all and just am unable to reply to you individually... So here goes...Please read carefully and hope I get my question/message correct.

Firstly , it seems to me that if you are a primary and the onset of fibro just suddenly appeared or was diagnosed due to unexplained aches, pains etc with no more obvious signs of anything else more catastrophic.. then my question is...

What caused those "symtoms" or feelings of unwell...? Did you have a virus some months before, a bad bout of flu, anything stressful ie. house move, divorce, death of loved one.. an operation ? Try to think back ( I know it can be hard, but just sit quietly for five or so minutes and let your mind conjure back to the first "issues" prior to your fms diagnosis.

Secondly, if you are a secondary with fibro... and it seems many of us are and whilst reading all the replies get the sense of different issues ie illnesses, stress, surgery etc... If you can recall... What differences in sensations or of feelings of unwell were shown to you or felt that YOU KNEW that they were not part and parcel of the illness or illnesses you already have/had.

Hope this makes sense... if not just post question or if you would answers... I know this seems longwinded, and I ( or infact any of you in reading this) may not get or achieve what it is that is what I feel a missing link or a connective which brings about the actual CAUSE of FIBRO... we all have symtoms of this chronic condition.. but until we find the cause.. and this may alternate between each individual but I feel there will be or should be a common thread if that makes sense.

Phew... got that out.. think I need a cuppa.. Gentle Hugs xxx

[tinkerfae in reply to Hidden]

i knew it was fibro as my current condition only affected from waist down then all of a sudden it jumped to my upper body and sleep pessure pains got bad and hand swelling looked it up and im classic case!!! but im secondary to calcium disfunction, osteoporosis, scoliosis muscle spasms, nerve damage, anxiety and being an ex gymnast causes extra wear n tear!! i tried pregabilin but after 3 months on it i had lost a stone was always tired had developed ibs and had kidney test probs so i came off, ihave just started gabapentin but its not doing much? i am prescribed diazapam for muscle spasms n tightness and they help relieve pain more than painkillers for me but they keep trying to alter my meds, wen they do i end up ill!! rant as its late and i cant get bk 2 sleep!!!! hugs

[Hidden]

Ps.. from the onset of my fibro diagnosis I too have been challenged with different "vision" I now need glasses for pc work or reading... I am told it is "as we get older" and it is true that I may have followed in my Mothers footsteps, however for me this happened far too quickly after fibro diagnosis, and fibro was diagnosed very fast ( a year or so) after my last operation.

Just sharing so you know Im not just gathering, but truly want to find answers.. x

[Hidden]

How strange most people are secondary

[Hidden]

Yes it sure does look like it doesnt it x

[Ginsing]

I have to put my hand up to being Secondary vivien what an interesting exercise xgins

[sue57]

I suppose I'm secondary too. Had osteoarthritis maybe 1 or 2 years before fibro was diagnosed. I'm interested in this costochondritis. Is it part of fibro?

[Hidden]

Hi Sue57.. well costochondritis is a very painful conditon of the chest wall... you can click this link for further info.. I dont have any answers if connected to fibro although I know that you can get pains in the chest and like a heavy pressing down which is not nice with fibro.. this is why truly thorough investigations to rule out other illnesses/conditions need to be done for sure before fibro diagnosis... hugs x

patient.co.uk/health/Costoc...

[Hidden]

This is such an interesting thread Lacey, thank you so much for posting it! So many comments, some very different but there is no doubt that we are all in the same boat and we all understand!

It really shocked me just how many symptoms I had within having Fibromyalgia. Seeing all the symptoms listed was a bit of a bombshell but proves that we are for real because no-one in their right mind would dream up all those awful illnesses etc.

[wiccamom]

Hi, i only (haha) have fibro, i fell off a horse when i was 16 and went through many many yrs of just having back pain and sleep problems, got shunted around but never diagnosed. I had some episodes where my legs went completely dead and when in late 20's after birth of second child, i ended up in hosp because of the dead legs and they blamed post-natal stress!! Then when i was mid 30's the rest of my symptoms kicked in: ibs, lack of concentration (had to give up on my degree),memory became shocking, the pain was unbearable, my hands didnt work properly and i could no longer walk far, without help, more and more episodes of the dead legs followed. My docs sent me for psychotherapy at this point but they said it wasnt all in my head and i needed another referral. Within a few months i had had x-rays and mri's and then got sent to rheumatology dept.

Phew!

This was when i got diagnosed with fibromyalgia and went on a 6 wk course on the condition at the hosp. They do attribute the condition to physical trauma and (mainly) women in their 30's and explain that its due to receptors in the brain, they still cant explain why though! they sent me for physiotherapy but each time i went it left me laid in bed for a few days, having 3 young kids by this point i couldnt risk going for that treatment.

So i guess that makes me a primary sufferer as have no other conditions or illnesses. Hope this helps xxxx

[Chellee]

Hi hunni sending soft hugs to u all Unfortunatly i am secondary have other health issues too O.A. being one of them but i try to stay pos but its not always possible as you all well no xx

[Ozzygirl64]

I am primary, diagnosed 20 years ago I think, but I had migraines before that that were finally diagnosed as a rare form. So now I am not sure. I also have other illnesses after fibro including COPD & Emphysema, and a whole lot of other confirmed illnesses. The most recent, Meneieres xxxxxx

[josieb]

I'm primary. Had nothing except asthma. Then my I had the worse 12 weeks of my life. My nana died, then my mum and then to cap it all off I had an ectopic pregancy. About 2 months later I had tingling, numbness, brain fog and speech slurring. Docs started tests and then I just kept getting more symptoms and finally 7 years later finally diagnosed. I have always been an over achiever and people always come to me in a crisis. I sometimes think is how I cope with stress. Instead of letting it go I keep it internally. Well the old me did. Now I let go, it's hard but it makes me feel better in myself but interestingly my fibro is as bad as ever. So maybe I'm just talking rubbish in trying to make some sense of this weird condition. Have to stop typing, pain in fingers excrutiating. Good night x

[Hidden]

Hi i would say i'm secondry as suffered wtih health problems from a young age, to tired to list at mo. but maybe i will list them once i sleep xxxxxxx

[tulips123]

Definitely 2ndary. I followed a link (yesterday I think or maybe day before) to a long but very informative piece on thyroid/fm etc. which really put everything into context, especially if you have a long history of health probs. and possibly going back to abusive childhood etc. The point he made which peeps might find interesting was that even if people have had tests re. thyroid which 'proved' negative people can still find an improvement in their condition (not just in FM) by using levothyroxine! I cant remember who placed the link or where to find it but I did make a note of his e.mail address if anyone is interested in reading more:- [e-mail]

[TIDDLYF]

I am way past secondary if you want a list of primary symptoms. Im not sure that you do but in case it helps my diagnosis went a bit like this:

Osteoarthritis

Raynauds phenomenon

gynae problems

psoriasis

total hysterectomy (put on HRT)

psoriatic arthritis

cervical spondylosis

car accident - whiplash injuries to neck and back

fibromyalgia.

I think thats it i sometimes miss things out. But even with all these things i am not entitled to ESA DLA or anything and am at moment looking for work - (which i genuinely do not believe i will be able to keep up for any length of time).

Knew it i missed out carpal tunnel syndrome. Hope this helps

[Hidden in reply to TIDDLYF]

So many hugs flying your way... x

[Hidden]

Good god, I am primary. I think I over did it last year on the work front. I was working way to many hours and I got run down. I worked with palliative clients for an agency so its was hard to turn people down. Anyway i caught a cold and got a chest infection which I ignored. It went onto pleurisy on the lung. I had 2 lots of antibiotics and it eventually went. I stopped smoking at the same time. I went back to work and within a couple of days, my legs went! They refused to move at all. Then i couldn't remember things and i started to hurt all over. My ankles,legs and back are the worse, they were so bad I gave my job up. Then docs did all the tests and on the 20th aug this year I was diagnosed with fibromyalgia. I don't think that the pleurisy caused it because thinking back I've had mild symptoms for many years. I do think that my body got so run down it brought the fibromyalgia out in style.

I am no expert but I think we all have it, it just takes something to trigger it off.

Kind regards

Teresa x

[Hidden]

Teresa, you could be right... we all have what I call "angry" cells in our body.. laying dormant so it could be just a trigger... it is interesting that many of us are secondary and fibro diagnosed after another illness or trauma... Can anyone relate anything to childhood.. say a disease.. like glandular fever etc? As I do know that in our complex yet wonderful bodies we can deem to get over something as in healing or healed, but it is just hiding if that makes sense.. we can overcome the symptoms but the cause is still there waiting to spring into action again! For instance I have had glandular fever twice, some Drs say you cant and others have said oh yes you can as you are already predisposed to the condition...

Hugs and thank you to all for responding x

[realsorelady]

I have had many diagnosises over the years, but my problems started when I got a prolapse after the birth of my 2nd daughter. I was 25. * Eight years later I had a hysterectomy, then I had to return 2 years later for op because my stomach and bowel were knitted together with all the inside scarring and adhesions. Not a sorry or ounce of compassion anywhere, and raising my 3 daughters alone was hard. I slipped a disc and crawled into A & E when I was 30 but I managed for a few years then got neck and back pain, I was told menstrual arthritis, arthralgia, depression, chronic disc prolapse. I had a lot of hospital visits and scans and I have had to move alot because of my violet drunken ex and my neighbours from hell. I had my fair share of stress. But at this moment, I been told its Degenerative Disc Disease and Fibromyalgia. I dont know anymore, but life is extremely hard not only financially but emotionly too. I feel very lonely right now, but I am still grateful for my family, who try but dont really understand. Sorry, its been a tough few years and when your told its unlikely to get better well you do wonder!!!

Sue x

[Hidden]

Realsorelady... HUGE virtual soft Hugs for you.. bless you... it must have been so difficult and probably still is.. but you know you have got through it... if you look back you will probably wonder.. how on earth did I cope with that.. but you have and still are.. so please be proud of you... I know that the future can be a scary place to think of especially when so poorly, I find trying to take one day at a time helps... its not easy when in pain and your mind then starts to wander and wonder.. but trying to focus on the hear and now and give credit to even the little things that are achieved really does help. Im glad you have family around you, even if they dont completely understand...who does unless experiencing. Stay strong.. Hugs xxx

[myrtil]

I must be secondary have O A most parts of my body,get terrible pains in my head this might be to do with spondalitis of the neck,tiredness,not been sleeping well really for many years, I put it down to loosing my mother that was 11 yrs ago and be for that my father inlaw and my husband of nearly 40yrs was diagnosed with prostate cancer.he died 8yrs ago,I also suffer with anxiety,bowel trouble,had a full knee replacement 3yrs ago, op went well but things have seem to be going wrong since then more pain. pins n needles like symptoms every were,hot and cold,and blurred vision at times,I work 30 hours a week.but am off sick at the moment just cant focus on things,sons going in for a op soon which I am concerned over as he will be off work for 6 to 8 months,he lives at home with me,I retire in 9 months,was hoping I could carry on working until then but at the present time am feeling very anxious of going back!..Am I old!!..61..all you hear is people saying...Its your age!Grrrrrrr...(((Hugs)))..to All xx

[Loopykaz68]

Hi mine is secondary as I was diagnosed depression ,anxiety ,stress ,ibs all brought on by the trouble with my eldest son who has learning disability s and I constantly worrie about how he cope when I am no longer around as he needs every day help with money his bills he has supported housing but the support workers are not a lot of help as he can still get to his money and get him self in more trouble with more phone contracts than I can rember sorry to go on so long x hugs Cherokee

[trekster22]

I think my fibro is secondary because it was caused by childhood trauma and I also have EDS/HMS as well.