please help in need of advice

Shell

Hi
Once again i am asking all you kind peeps for advice.
As many of you will know i had a full body scan last month and to cut a long story short i have PA and just diagnosed with fibro. I decided to ring my rhemy nurse to see what my results were from my body scan as i or my doc had not heard anything. anyway dont know if this is good news or bad news bare with me.
The results showed no hot spots and no damage so yes thas good news but my query is this i am stil hurting not as bad as i was when i get up from sitting or in the mornings my hips and ankles hurt my knees hurt when i am walking up stairs so i ask all you people with fibro do you get this pain constantly with fibro? so back to PA rhemy nurse said it looks like my mtx is helping with my pa if it is that or maybe its just fibo so i am really confused now and rhemy is away til nxt wk.I cant get in to see my doc either to speak to him.
What i am trying to say is do i really have arthur or is it fibro and now worried i have been taking mtx when i didnt need to. All you people on mtx and arthur do you sil get pain when on mtx and nothing shows up in bloods or scans i just no i am in all this pain but not sure what is what anymore and whats causing my pain.
Help please i need some advice
Sorry to keep going on but i dont seem to be getting answers. Rhemy nurse said when rhemy back and sees my results he may decie to take me off mtx and see how i go
Michelle

jaspercat

Hi Michelle, I have been on MXT for some years, both tablets and injections, my ESR is very low but am still in alot of pain mostly in my hands and wrists, hope you soon get the answer to your problems love Jasper Catxxx

mash65

jaspercat wrote:

Hi Michelle, I have been on MXT for some years, both tablets and injections, my ESR is very low but am still in alot of pain mostly in my hands and wrists, hope you soon get the answer to your problems love Jasper Catxxx

hi, dont know if this helps u. went physio today she says xrays & scans dont always show any problems i.e damage to cartlidge, bones.can look perfectly normal.only u know the pain that ur in.so it can be a long ,long process to get to the bottom of ur problems,hope that makes sense.im getting nowhere,slowly & really down.there will be light at the end of the tunnel somewhere,it takes time.i cant help you on meds,she also said people with alot of damage shown on xrays etc r not always in any pain!!!hope u get some answers soon.good luck debs x

Shell

Thank you so much for your replies i guess i feel a fraud but i am in so much pain and very confused with it all. If as they say my arthur is in control then why am i in pain surley it cant be fibro cos that has settled down the pain is in my joints when i had trouble with that i had pain everywhere and was exahusted.i am so confused these doc dont feel our pain and when you dont have evidence to back it up worried he wil take me off mtx and i have a really bad time.
Michelle

mash65

Shell wrote:

Thank you so much for your replies i guess i feel a fraud but i am in so much pain and very confused with it all. If as they say my arthur is in control then why am i in pain surley it cant be fibro cos that has settled down the pain is in my joints when i had trouble with that i had pain everywhere and was exahusted.i am so confused these doc dont feel our pain and when you dont have evidence to back it up worried he wil take me off mtx and i have a really bad time.
Michelle

babe, i feel the same.ur diff. not a fraud.i think we all feel like that at some point. the answers r out there, how long it takes to get them.........is another story.hope things get better.debs

woodbon

mash65 wrote:

Shell wrote:

Thank you so much for your replies i guess i feel a fraud but i am in so much pain and very confused with it all. If as they say my arthur is in control then why am i in pain surley it cant be fibro cos that has settled down the pain is in my joints when i had trouble with that i had pain everywhere and was exahusted.i am so confused these doc dont feel our pain and when you dont have evidence to back it up worried he wil take me off mtx and i have a really bad time.
Michelle

babe, i feel the same.ur diff. not a fraud.i think we all feel like that at some point. the answers r out there, how long it takes to get them.........is another story.hope things get better.debs

I do understand, I hope you will get something positive but iits a long, hard job, but don't give up. Sue :?

eugeneg

Shell wrote:

Hi
Once again i am asking all you kind peeps for advice.
As many of you will know i had a full body scan last month and to cut a long story short i have PA and just diagnosed with fibro. I decided to ring my rhemy nurse to see what my results were from my body scan as i or my doc had not heard anything. anyway dont know if this is good news or bad news bare with me.
The results showed no hot spots and no damage so yes thas good news but my query is this i am stil hurting not as bad as i was when i get up from sitting or in the mornings my hips and ankles hurt my knees hurt when i am walking up stairs so i ask all you people with fibro do you get this pain constantly with fibro? so back to PA rhemy nurse said it looks like my mtx is helping with my pa if it is that or maybe its just fibo so i am really confused now and rhemy is away til nxt wk.I cant get in to see my doc either to speak to him.
What i am trying to say is do i really have arthur or is it fibro and now worried i have been taking mtx when i didnt need to. All you people on mtx and arthur do you sil get pain when on mtx and nothing shows up in bloods or scans i just no i am in all this pain but not sure what is what anymore and whats causing my pain.
Help please i need some advice
Sorry to keep going on but i dont seem to be getting answers. Rhemy nurse said when rhemy back and sees my results he may decie to take me off mtx and see how i go
Michelle

Hi Michelle,

I have had RA for 6 years now and Fibro for just over 2 years. I also have Plantar Fasciitis and Achilles Tendonitis - Basically everything hurts! My Rheumy told me the other week that my "scores" were low so there was no inflammation and no joint pain, however this did not explain the constant pain I was feeling. I have had my medication adjusted previously for my Fibro and I think this needs adjusting again!? The medication I take is nightly - Dosulepin - I used to get a good night's sleep that is until recently. According to my wife I cry out most nights in pain, this means my pattern is broken, I am seeing my Rheumy again in a few weeks. With me it is either one or the other or all at once. Recently I have began swimming regularly again and whilst this helps my body rebels!

Take care,

Eugene.

gettinby

Hello Shell,
Just had my body scan but will have to wait 6 months for results.
It is an interesting point you make and one which I have raised here before.
My understanding is that RA is a problem in the auto immune system as is FM. Both have no specific, conclusive test and neither do they know the causes.
I have had OA for many years and then was DX with CFS, later got DX of FM and now looks like RA also.
My personal theory is that our immune systems are capput, which opens the door for all manner of nasties, which I think accounts for the ups and downs of all our ailments.
Like you I want answers but I feel that the medical profession doesn't really have them, the bottom line then is gettinby and having fellow sufferers, as here, to talk to.

P.S There is an FM site (American but with English also) that I found very good, it is Immunesupport.com, well was, but I think it has changed name but if you google it I'm sure you'll be re-directed.

All the best

Shell

Hi All
Thanks again for all the replies. Stil no change and stil in pain.I did a very silly thing last night and didnt take my amitrip (convinced myself if i take them every night i will get addicted) anyway i didnt get much sleep and was in agony with the pain made me realise how much this helps me to sleep so not had a good day today.
Still confused by it all why am i in so much pain does fibro cause this much pain in joints? as according to everyone else my arthur is under control. Jus cant see light at the end of the tunnel and find myself going down hill again.
Thanks for all your support and your kind words
Michelle

livinglegend

Shell wrote:

I did a very silly thing last night and didn't take my amitrip (convinced myself if i take them every night i will get addicted) anyway i didn't get much sleep and was in agony with the pain.

You should tell your doc before you come off any meds and always keep some by your bed with a glass of water, just in case.

There is a vast difference between addiction and necessary medicine. :? Addiction is something that you don't need and can't stop taking. :shock: Necessary medicine is what you need to take to help to get by. I know that I will need medicine for the rest of my life and if I need medicine then its not addiction, its survival.

Joseph 8)

frogmorton

Hi Shell
Joseph is right - you need 'em you take 'em. The amitrip is the one I don't like taking either!!! But I do and they are in my bedside drawer so I don't forget. Remember your body needs to rest.
Take care
We're all with you.
Toni x

gettinby

Shell wrote:

Still confused by it all why am i in so much pain does fibro cause this much pain in joints?

If you visit any FM site especially the one I mentioned you will be shocked at how debilitating FM is.
It can be far worse than arthur and with even less medical knowledge and less, if any, effective treatment.
The problem is that there is an awful lot of crossover with your ailments and as such a difficult DX.

jenzie06

At the mo my rheumy is trying to figure out whats going on with me. He's only been trying to figure it out for 10 yrs! I've got RA and fibro and trying to work out which one is playing up is extremely difficult. It does occasionally get to the point where you start thinking that it must all be in your head. I sometimes wish that when something hurt with the FM it would swell up or look different. Usually people can't tell that you're in absolute agony and that you're totally cream crackered.
I don't really know what the answer is but I try really hard not to say how crap i'm feeling everyday because people become very bored very quickly, which is why I'm very glad this site is here!

Shell

Hi
Once again thanks and reading through the posts i agree with all of you and i am soooooo glad for this site to get advice.
I have had a look on the other site for fm and was amazed how others suffer with fm so that has helped reaing them and made me realise this isnt all in my head.
The one thing that i am struggling with at the mo apart from usual is pain in my fingers it started in my third finger left hand and now it is in my little finger and middle finger same hand so all three now and it is bad through during the night when i havent moved them they really hurt and takes me ages to be able to bend them. As anyone else had this?
Michelle

colinone

Shell wrote:

Hi
Once again thanks and reading through the posts i agree with all of you and i am soooooo glad for this site to get advice.
I have had a look on the other site for fm and was amazed how others suffer with fm so that has helped reaing them and made me realise this isnt all in my head.
The one thing that i am struggling with at the mo apart from usual is pain in my fingers it started in my third finger left hand and now it is in my little finger and middle finger same hand so all three now and it is bad through during the night when i havent moved them they really hurt and takes me ages to be able to bend them. As anyone else had this?
Michelle

Hi Michelle and all some great tips. This is just my opinion, over the years i have tried many drugs am now on mtx and embrel 20mg mtx 50mg embrel. None of the atrhrits drugs ease the pain they just help your amune system and try to prevent your illness getting worse. I have the same problem with sleeping tablets and pain killers trying not to take them as offten as i should. I think if i was younger I would take all the drugs i could that help and perhaps i would not be as bad as i am today. I know its not easy but you have to put your faith in your Rheumy. The illness plays havoc with your body and you need to rest.
Colin