Confused :/: I saw a Rhemotoligist last... - Fibromyalgia Acti...

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Confused :/

Nicknac profile image
16 Replies

I saw a Rhemotoligist last week after many trips to the GP, he diagnosed me with Osteoarthritus and Rhemotoid Arthritus, when I mentioned I thought I had Fibro he said we diagnose Fibromyalgia when the diagnosis does not fit in to a box ie OTor RA . So basically saying if we diagnose fibro it means there is not a box to put you in. Is this correct? as reading on here some of you seem to have it all, i'm so confused :/

I'm only 49 and evidently for me the menopause caused my OA with vengance, I evidently have it in my knees, feet, hands and neck. Not sure what the next step is as have no follow up appointments booked but did have bloods and xrays after appointment. I'm also wondering if it came on so quicky how much worse will i get.

Any advice would be greatly appreciatted,

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Nicknac profile image
Nicknac
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16 Replies
jolow profile image
jolow

Hi,I am sorry that you have both types of arthritis.I have osteoarthrits and secondary fibro i was told that its called secondary as it came after osteo which i have had for many years it has progressed into all joints and i am a few years younger than you.May i ask if you have ibs and any allergies as these are also part of fibro a good indication towards diagnoses . xx

Nicknac profile image
Nicknac

thanks for getting bk to me, we really are too young surely to be in this amount of pain, with no cure :/

no i don't have ibs although don't know too much about it and no allergies either

My main symtoms are pain and extreme fatigueand memory loss, on a bad day i can hardly lift my arms and come down stairs on my bottom as feet and knee's too painful, thankfully the good days outway the bad. I'm not one to moan and tend to get on with things i'm just frustrated as even small things ie taking the lid off something i find difficult.

How do you cope and remain positive as i do feel remaining positive will help a lot xx

Extremelygrumpy profile image
Extremelygrumpy

Hi I got fibro in my 20s along with chostocondritis and ibs osteo arthritis at 43.... Basically my body is cream krackered... Having a bad week with arthritis and ibs I,ve sent my fibro to sulk in the garage can't be doing with everything at once........

VG xx

Nicknac profile image
Nicknac

Hi Verygrumpy nice to hear from you, over heard my hubbie say to his very mobile mum

" she's got Arthritis" for which she replied yeah i've got that too......ppl don't understand how painful it is do they? it's so common, when my friend asked what the diagnosis was she said oh that's great news ,urm no not really it means this is how it will be for the rest of my life constant pain, not sure how that can be good news

hope you feel better tomorrow verygrumpy and the fibro stays in the garage x x

Extremelygrumpy profile image
Extremelygrumpy

Oh my I know just how you feel, my mum phones every day to see "if I,ve got over it yet" I can,t make her understand I don't have a cold

Nice to meet you too

VGxx

julieevh profile image
julieevh

Sadly with Fibro I think many of the suffers know a darn site more about the condition than some doctors. There are no NICE guidelines (even though Fibromyalgia is recognised by the World Health Organisation) and the level of GP and consultant knowledge is often below the standards you'd expect.

On the one hand he is correct in so far that Fibromyalgia is daignosed by exclusion - and he has diagnosed certain conditions already so perhaps he feels he has got it all covered. Time will tell if he is right.

On the other hand Fibro is also often described as "Soft tissue Arthritis" - so maybe he is not so far off the mark.

Of course it may be that you have Chronic Fatigue Syndrome as well or instead of Fibromyalgia.

The menopause clicked up my CFS a few dozen notches too .... ohh the joys of being a woman!

((((( gentle hugs )))))

Julie xx

Nicknac profile image
Nicknac

Thanks Julieevh, sorry to hear your suffering too, I'm trying to remain positive as at the end of the day my health is my issue and all the Dr can do is help. I'm at that stage where I'm not sure how much to push my body as I can't see a pattern as yet.

Did a few hours of housework a few weeks ago ie cleaning cooker, washing floors etc and the next day i could not even lift my arms as the pain was horrendous it lasted about 5 days, feel ok today usual aches and pains but i can cope with that.

also getting concerned about the winter as i work in a relatively cold workshop 8 hours a day and sometimes my hands don't seem to want to co operate, time will tell i suppose.

Have a great day guy's stay positive :D x x x

XHelp profile image
XHelp

Sorry to hear you are suffering, I was diagnosed with Rhumatoid Arthritis, then mecfs, then fibro then osteo arthritis etc etc. Then some GPs didnt accept that MECFS was real either, with me I seem to have the fatique constantly in varying dgrees and pain in equal measure...when I have a ra attack it seems to obliterate the others, I think it may be because I focus on the worst one and then notice the underlyoing stuff when it receeds again. I think you need to pace yourself...if you want to achieve a big task make sure rest before and after doing it. Just because you have a good day dont try to do it all like the say about eating little bits and often is better than loads at once. Mind you I seem to eat all the time just to try to feel better, so maybe ignoring me all together is best. I hope you find a coping strategy that works for you and finding things to smile at coupled with moaning loads, eating all the time. and sleeping the rest works for me. Best of luck hugs to you xx XH

Nicknac profile image
Nicknac in reply to XHelp

thanks so much for your support, it's a very lonely place :/ I know it's hard for people to understand and i try and be tolerant, but the people who know me well should know i don't complain, so when i do it's important to listen!

Speaking to one of few friends(listen to me full of woe's) she said i needed cheering up and suggested some retail therapy. when i said i'm sorry i can't as it would put me flat out for days with all the walking, she said i think you need to make the effort it's only arthritis!

How can you remain tolerant to other peoples ignorance?

Christ I sound like a right moany mini sorry, there are so many people worse than me including yourself, thanks again for caring enough to reply ((((hugs)))))

theshadow profile image
theshadow

Hi Nicknac,

Great name by the way!

I can so empathise with you & your comments. It really makes me angry too, the sentence that includes "well it's only ............"!!! I'd like them to have some of our "onlys" for a trail period!! They'd be flat out on their backs in bed for a week, groaning & moaning!

Compassion, understanding, empathy, all seem to be in short supply, we need to start teaching it in schools! lol I don't know what the answer is, but it's not worth getting worked up by their ignorance, as anger makes me worse as it's always followed by tears!

Tell your friend you'd love to go shopping with her, is she ok to push the wheelchair you will hire at the shopping centre ? Maybe, just maybe she will then realize it's not that you don't want to, but can't!

Good luck, gentle hugs & caring thoughts coming your way! xx

XHelp profile image
XHelp

My daughter took me out in the wheelchair to go shopping one day, when she went off to the loo the shop assistant took me around the store, when my daughter came back she thought someone had stolen me....not a hope of that, they would bring me back sharp enough. We still laugh about it, we do have loads of fun when we go out and about and that really does help, even if shes worn out from pushing me and me from laughing xxx

Hugs to you XH

Nicknac profile image
Nicknac in reply to XHelp

i am very fortunate that i'm able to walk just not that far as apart from the aches and pains my back starts throbbing and it goes into spasm :/

One of my traits is I am extremely stubborn the thought of using a wheelchair terrifies me. This makes me think that if you guy's need a chair i am so so fortunate and now realise that as I said before many more ppl like yourself are so much in need more than me.

Thank you so much for your support it means so much to me much love xx

Nicknac profile image
Nicknac in reply to XHelp

My boys are 17 19 21 and 25 and just coming to terms with the fact of turning their footie socks the right way instead of leaving them all knotted as my hands often don't cooperate lol

The thought of asking them to push me around the shops(which I currently don't need) i don't think they would be ready to do that :/

What a lovely daughter you have to do that great you can have that time together and have a laugh.

I've realised i need to laugh more and enjoy what i DO have and not what i haven't thank you for reminding me :D

much love x x x

julieevh profile image
julieevh

I make use of the mobility scooters that most big supermarkets and shopping centres have nowadays. It makes shopping so much more plausible! Some tourist attractions have them too, KUDOS to RAF Cosford for having no charge for their scooters.

Julie xx

XHelp profile image
XHelp

Hi again, morning, I didnt like being in them at first but found if I was chatty and a bit daft people over came their own difficulty and laughed too...Mobility scooters are great they go quite fast and have a horn and reversing beep so you can get up to loads of stuff, take someone with you with a sense of humour is a must or you get into trouble. I usually manage to get some one elses husband to reach stuff off top shelves etc coz mine has generally wandered off. I was bed bound for months with a spinal spasm I couldnt wait to go outdoors didnt matter how....except the time when my husband wanted to push me around The Great Orm in Llandudno ( its a huge cliff with a car park at the top) stayed in the car that day !!!! And I definately wouldnt trust my son not to leave me somewhere if I moaned. but have fun whenever yuou can, my grandson is another source of infinate joy, especially when he tells me he cant go to school today coz hes got a bad back too....he is only six bless. Even if life is a struggle and I know it certainly is there are things to be happy about. Everything started for me following a motorbike crash, but if that hadnt happend I wouldnt have met my husband, live in a stunning place and am never allowed to take myself or this thing to seriously. So out of every cloud, ok Im off now I beginning to irritate myself with all this positivity...have a good day and enjoy all you can, oh get them to turn their own socks they probably can xxx XH

Nicknac profile image
Nicknac

:D what a lovely reply i have a HUGE smile on my face, I have this image of me causing havoc in a chair lol as i cause havoc without! and think thats what the boys are frighten of as I don't like to sit in the corner and be quiet i would probably decorate the chair with tinsel too oh and a horn ha ha ha me and horns urm another story, thank you so much for sharing your positive thoughts means a lot xxxx

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