I hate fibromyalgia......: I spoke to my rheumy nurse... - NRAS

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I hate fibromyalgia......

sylvi profile image
31 Replies

I spoke to my rheumy nurse this morning about all the pain that i am getting. She is of the opinion that the pain is fibro not ra. This is due to the weather as much as anything. I have had another bad night,i kept getting up and going to the loo all the time. I am having weird dreams all night as well and i can't remember what they are though just that they were weird. Everything seems to ache today and i don't know where to put myself. Yesterday i got my hubby to drop me off in the village and i decided to walk back,what a task that turned out to be. It was very slow and hard work as well. I had to keep stopping,but though it took me a long time i made it. Now whether thats part of my pain i think it might be,but its not all the pain as my rheumy says it is the dreaded fibro. Tomorrow i am seeing my psychio about my knee as there is a lot os swelling there and i need to check what it is and then on wednesday i am seeing a dr in my practise about my health overall and to renew my drugs as well. I am very tired as well so it looks like a nap this afternoon. Poor old hubby he doesn't need all this on his birthday.

Hope you are all wellish. Love sylvi.xx

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sylvi profile image
sylvi
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31 Replies
zimmie profile image
zimmie

I was diagnosed with RA then Fibro and even now after 4 yrs i still cant tell difference. What meds if any are you taking for the fibro?

medicinalme profile image
medicinalme in reply tozimmie

Hi Zimmie: With yourr RA it should be in a certain area, where Fibro, it makes you fatigued, basically sore all over. Cramps in legs (nothing like a Charlie Horse) much worse. The ambitition you had prior to seems to be able to pick up. You may have 1-2 good days in a week or none at all. You just feel blah!! At present I am on Amytripiline at rougly 3 times a day, again they make you tired. As well as Percocet due to back

injury. Fibro itself is all over your body muscles as well as sometimes your fingers' will just start paining when you are trying to use them to long. Hope this has given you some advice. This is the way my Physician explained it to me. Take care!!

watson3 profile image
watson3

Love doesn't keep life's scores.

Hope you feel better after a NAP.

HAPPY DAY........OH

Morning all

I empathise with you Sylvi, I am struggling today - went to son-in-laws 30th lunch yesterday and feeling the effects today. I also have Giant Cell Artiritis which is giving me terrible headaches - this is dragging on as well and waiting yet more results and more tests. Had a Bence Jones test done - this is looking at the fact I had protein in my blood, so had urine tests over 3 weeks ago and still no result. Apparently it is not a test that is done too often and they wait until they can run it in a cost effective way (doesn't help me..). This test is for myeloma! So hence quite stressed whilst waiting.

Have RA and fibro - and like Zimmie I find at times it is trying to find the difference between the 2 - often think the ache is fibro and the pain is RA. The days when my fingers nails and eyelashes hurt (like today) I think it is more fibro, but then when I go to get up and my hips, knees etc hurt I feel that is the RA - so totally rubbish day today GCA - headache, RA - joint pain and Fibro - everything aches!!!

Like you Sylvi - nap this afternoon is the order of the day, if I can stay awake that long!! and as for the rest of the day - shan't be doing much at all. Day to actually listen to my body -something I am not always very good at.

Take it easy eveyone out there - weather is rubbish too.

Hazel x

sylvi profile image
sylvi

Ladies, i do take drugs for fibro and it doesn't seem to make much difference in my opinion,mind you i wonder what i would be like without them.

I feel rubbish today,ache,tired and so fed up. Hazel you seem to have your share of troubles don't you.I am sending hugs your way and if you get a sleep,i hope you sleep well.

I take pregabulin and amytryptaline as well as all the drugs for ra. Does any of you who have fibro get the sweats as well.

For all of you are taking a nap this afternoon,sleep well.xxx

Philip profile image
Philip

Hiya all, Can I just add a few words please, if you have fibromyalgia, you will find that Fibro doesn't cause swelling in any part of your body, medication varies from person to person as none of us are all the same, unfortunately with Fibro things are not quite straight forward, fibromyalgia causes pain signals from the muscles around the body to the brain and sometimes the muscles tell us lies lol ( naughty muscles) and when this happens we know by finding out that the painkillers just don't work as they should, the pains we feel are 50% pcycosamatic and 50% physical so when the pains don't stop when using painkillers then find something else to concentrate on and I'm quite sure you will find this will help but when the painkiller does work the rest and feel the benefits of the painkillers.

I know this really helps me and the members from my fibromyalgia support group.

Take care and gentle hugs.

Philip

beachbabe profile image
beachbabe

Hi ,

just wondering if u can get fibro as well as RA ? i didnt know u could - a friend looked up the symptons as she thought she had it but it is exactly how i am feeling!

i feel different to the RA symptons so could fibro be it?

who diagnoses it _ my GP or rheamy team ?

any answers gratefully received.

Beachbabe

sylvi profile image
sylvi

Beachbabe, my rheumy nurse thought i had it and she got the dr that in clinic that day to diagnosed me. I spoke to her this morning and she seems to think its not my ra but the fibro causing all my trouble. I wonder if it could be both as my fingers ache as well as other places.

Yes you can get fibro with ra and it does go hand in hand with the ra.

Hope this is of some help to you. xxxx

beachbabe profile image
beachbabe

Hi Sylvi

thanks for ur help - i am due to have my second round of rituximab in dec so i will try and speak to a rheumy nurse then.

i just feel really odd - like i go from thing to thing forgetting what i was doing before and my brain seems to b completely foggy ! ! !

perhaps it is old age and the fact that i am blonde ! !! HA HA HA

hugs beachbabe

sylvi profile image
sylvi

Beachbabe,its called brain fog and its a side effect of fibro as well. No its not because your blonde. At the moment i wonder how long i can go on with this pain. I am soo fed up with it at the moment. You take care. xxxx

emmajoyce profile image
emmajoyce

When I attending my RA Spec in April they wondered also whether I had Fibro as well as

RA. I had to be taken off MTX, failed on leflu and humira, and this time last year had

RTX infusions. When I saw her in May I didn't think that they had done any good hence

she thought I may have Fibro. I started in June pregablin 150 mg twice pd. However

my pain in fingers, feet, and elbows are still bad, and I have this , all I can say is a general

ache of everywhere in body. Yes I have these brain/dead/foggy moments. bad heads,

achy body , shooting pains practically anywhere, bad sleep and yes the horrid wakeful

dreams - ugh . I am on no RA drugs at the present time other than celecoxib for infllamation and paracetamol and Tramadol. However the pain never goes away so

whats all that about

So glad I am not alone.

For the past 5 months I have had extreme pain on left bottom cheek and the pain runs

right down my leg right the way down. I can no longer sleep on my left side and I

get pins needles. Does anyone else get this. ?

Any help or suggestions to ask my RA people would be appreciated. Sorry to waffle

Rose

in reply toemmajoyce

Rose you should speak to your GP about the pain and numbness in cheek plus pins and needles as there is a potentially paralysing neuro condition called Cauda Equina that should be ruled out before you or doctors put everything down to RA or Fibro. Not trying to be alarmist but I have a friend who had these symptoms and needed spinal surgery for this rare but serious condition recently. Tilda

minka profile image
minka in reply toemmajoyce

rose

im thinking the pain in your left cheek is somthing they can siatica this is caused through l4/l5 disc bulging slightly

tiger profile image
tiger

Hi Sylvi, hope that your pain eases a bit so that you can have a good night and sleep well.

Take care of yourself, try and keep your chin up.

Wendy x

caroline777 profile image
caroline777

Hiya

Haven't been on for quite a while. Been sorting out work and other stuff but everything everyone has said strikes a chord with me. when i last saw my rheumy she told me I had fibro. One pressure point test on my collar bone area sent me through the roof and made her jump as well!!! She said that I had both. Nothing has stopped the pain in the way of drugs. Dreams, sweats and a dagger in the right cheek are all affectionately hanging on to me with a firm grip. I was struggling putting boots on the other day when it felt like someone had stabbed me in my buttock. Could hardly weight bear for about 3 hours then it gradually wore off. I get home from work at 5 and go straight to bed for an hour before i can function properly again! Oh woe, woe and thrice woe!! Apart from that I'm fine really Lol!. I keep doing loads of stuff I know I will suffer for but s-- it!

Love to all of you

Caroline x

sylvi profile image
sylvi in reply tocaroline777

Mine seems to be all down my right side Caroline. My eye,the joint by my right eye,my fingers,shoulders,knee ankle and i could cry i ache that much. Brain fog i've got a degree in it i think!! My eyes are always swollen,but the left eye is better than my right one and it looks like i have been given a black eye it is that dark now. I am so sick and tired of whats happening to me and i am trying to get help,but how much more of this i can take i just don't know. How long is a piece of string. xxxxx

caroline777 profile image
caroline777

Oh dear, you are going through it Sylvi. Mine is nowhere near as bad as yours, it sounds really rough and with no relief you must be at the end of your tether. Your symptoms sound horribly extreme. I hope you got a bit of sleep last night as it does make you better able to cope from day today. I'd suggest you had a couple of stiff drinks on the odd occasion and see if that helps! Take care and look after yourself. Love and hugs. Caroline xxxx

sylvi profile image
sylvi

Caroline, i don't drink so that won't happen. I am seeing my psychio this morning and see what he can do for me. Then i have a drs appt. tomorrow,so i hopefully will get to the bottom of it. I had a mini meltdown during the night,jst sat crying my eyes out. My darling hubby doesn't know what to do as he can't ease my pain,bless him. After my session with the tears i went back to bed with him and i managed to sleep until 6.30am and i don't feel too bad in my head if you know what i mean.

I will post later to let you know how i got on. Thank you for caring. Love sylvi.xxxx

minka profile image
minka

sylvi looks like ya in the war zone again

i whent for a swim yesterday the water was lovely and warm or its me that had his central heating on in the old body.

got up this morning ached like hell had a brew got back in bed for and hr.

then got up and whent for a 2 mile walk cos i said to myself im not tacking this ship lying down all before brakfast trouble with us lot we WONT give up. and nobody in the medical proffesion is any hep if ya body cant fix it self these days ya on your own.

well thats my moan for the day over feel better now

you rest up a bit today.

i think the only satisfaction one gets is their is a lot of us in the same boat but the pains realy get ya *.* back up i know what ya mean their.

and they say exersise helps im not to sure of this one these days

emmajoyce profile image
emmajoyce

Hello Sylvia

Good luck for this morning let us know how you get on. You poor thing really going

through it . Like you I just want to be right. Why is it we take all these medications

and don't feel better. Especially pain killers. I question myself thinking 2is it in my head"

I HATE it just like you.

Whats to be done. . . . . Take care,

emmajoyce profile image
emmajoyce

Thank you for all your comments above,. I will too speak with my GP tomorrow, I have

rung. Not sure what it is all about. I have had MRI already so why am I numb ? why]

do I suffer these pins and needles ? why am I in pain ? especially when taking tramadol

and also pregabalin ?

Grr. . .

sylvi profile image
sylvi

Afternoon all,i went to the hospital this morning and he has told me to ride my exercise bike and he also said that i am still more forward than a lot of other patients in my situation so thats good i think. He is having another psychio put me through my paces and he wants to see me after i have seen the consultant. So here i am after having a sleep feeling brighter than i did before.

Thank you all for caring so much. Love sylvi.xxx

Kaz1 profile image
Kaz1 in reply tosylvi

Hi Sylvi, glad you are feeling better, i also get sweats with fibro ! I am not taking anything for the fibro yet, started on leflunomide yesterday for my RA, have had really bad indigestion all day today, not sure if that's linked to the tablets.

Love Karen x

sylvi profile image
sylvi in reply toKaz1

Karen, i take pregabalin for my fibro.Keep a record of your symptoms so that when you next see your rheumy they will have some idea on what or if anything is going on. I would reccomend everyone to keep a record of their symptoms.

Love sylvi.xxx

Philip profile image
Philip

The thing about fibromyalgia is that it is 50% physical and 50%.psychosomatic so what I do personally , when the painkillers don't work for the pain, try to put my mind to something else to take my mind of it and when the painkillers do work then I rest with my feet up lol, works for some but not everyone worth a try though, puzzle books are pretty good for that.

sylvi profile image
sylvi in reply toPhilip

Phillip i do puzzle books,solataire on my laptop and i read magazines as well. sylvi.xx

Spuddie profile image
Spuddie

I am in the 'not got a diagnosis yet' phase. I had mistakenly thought that I had RA for quite some time but the Rheumy insists that that is not the case - simply some undefined Inflammatory Arthritis of the knee (and hip I say, but we are still 'debating' that). The Rheumy was no help regarding the other pains in hands, wrists, elbows, shoulders, back, other knee, ankles and feet - treat the symptoms and don't worry about it. He started me on Amitryptiline and my GP added Citalopram into the mix. Initally I was relatively pain free and feeling a bit more like my old self - but then it was warmer. Now it is colder - and here we go again. When I get cold it feels like I am 'coming down with flu' and I feel totally rubbish but don't get the flu. The pains come and go, but I get them everyday somewhere and most of the time in my hands and wrists. Driving over long distances I get them in my hands, wrists and shoulders/upper arms and feet and ankles and across the upper part of my back. Brain fog is back - some days I feel really thick and I forget stuff like names and words etc. and struggle to learn new things. I used to be a fraud investigator so was really quite switched on mentally - I know I simply couldn't do it now. I do puzzle books, and a lot of handicraft stuff that takes my mind off of it. The tiredness is starting to kick in again tho' not napping during the day yet, but falling asleep early in the evening while watching the telly.

Warmth does help - a nice hot cuppa works wonders on the hands. A soak in a warm bath helps as well. My GP says that exercise is also highly recommended and suggested a cycling machine as it's low impact for my knee. Apparently exercise can make the Fibro seem worse to start with but then gets better. Not tried it yet as the inflammartory arthritis is being a bugger just now and worse since the recent ittrium injection. The GP also mentioned hydrotherapy, but hasn't referred me for it yet. I don't know if I read this or the GP said it - but painkillers don't work for Fibro, or did I just make that up?

GP says it's very difficult to get a proper diagnosis for Fibro as there is not a test that can be done - no xray, blood test or scan. The press test should only be used as part of the diagnosis process and it's a case of eliminating all the other potential problems such as RA, Post Viral Fatigue, M? (the M thingy that it took Dr's years to accept was real) etc.

I suppose that if you have RA and then have Fibro on top it can be really hard to seperate the symptoms out.

sylvi profile image
sylvi

Spuddie, you sound a lot like me i'm afraid to say. My joints hurt and the fibro fog is really going strong at the moment. Keep a record of your symptoms everyday and next time you at the drs/hospital you can show them how you have been. They say keeping active is good,but how are you supposed to stay active when your in so much pain. I agree with all that you have said though. |Sylvi.xxx

roger-s profile image
roger-s

hi sylvi .. i have had a feeling of pain in musculus and joints . not the pain i usually get it feels like a.... poison tingling pain but also my joints are killing me,when i sit down i cannot stand up again . i thought it could be some king of flew bug . but reading this blog i am wondering if it could be fibromyalgia ..

sylvi profile image
sylvi in reply toroger-s

Roger it certainly sounds like fibro to me. You need to go back to your hospital and see if it is. Hope you get on ok.xx

in reply toroger-s

Poison tingling pain sums up RA pain up really well to me Roger thanks for that. I get this faintly often - like an echo of the old flares and can never quite explain to my OH why it's so particular and not like other pain.

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