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RA Anyone?

K

klynn52

Messages
11
Hi all

Long term diagnosis of cfs/me. Diagnosed in 1992.
I posted a while back about my symptom change ,from 2009 to present.

New symptoms with the usual fatigue problems or some times lack of fatigue problems were-
Brain fog/mental fatigue/concentration/memory/recall/learning tasks
Speech problems/slurred speech
Crushing pain in feet/toes
Muscle pain/stiffness
Heaviness in legs ,such that I found it more difficult to lift my feet when walking
Various pains/sensations like numbness, pins and needles ,cramps, tremors,
balance problems, crushing pain and problems with hot .cold and having problems with keeping warm ,insomnia and very poor sleep ,fatigue and sudden onset fatigue which just levelled me.

I have just recently been diagnosed with RA ,Rheumatoid Arthritis after just one flare-up.
Has anyone else got this with CFS/ME and do the symptom changes sound familiar to anyone in relation to the RA?

Could the RA have been the cause of the change in symptoms but only just recently materialised?

I understand that you can get PEM after activity but mine were permanent or is that more in keeping with CFS and not ME.

Cheers
klynn
 
Last edited by a moderator:
Shoshana

Shoshana

Northern USA
Messages
6,035
Location
Northern USA
Hi @klynn52
I do not know the answers to your questions, but I am interested in the topics you raised,
and I have sometimes wondered about RA, in my case.
I wonder how they diagnosed you with it, "after just one flare-up ? "
And which type of doctor gave that dx?

I am sorry you have had these worsening symptoms, for the recent several years.

You said they are permanent, so did not go away,
but have they remained at a consistent level, or worsened over that time?

And are some of the symptoms intermittent, or were they intermittent for the first couple of years they became permanent additions to your illness? Such as the pain in feet/toes ?

I would appreciate your input. Thank you.

Take care.
 
K

klynn52

Messages
11
Hi Shoshana
Thanks for your reply and interest.
I had symptoms of really bad pain and stiffness in feet ,toes ,top of foot and foot pads on both feet, which added to the problems I had with walking due to muscle pain and stiffness and balance issues and fatigue.

I also had wrist pain ,hand pain and finger pain ,stiff knuckles and pain and some swelling of the wrist and index finger. The pain was worse
on waking,very sore to walk on and the hand pain during rest got quite bad ,due to I assume ,to not being moved .I had the symptoms from November 2017 to April 2018.

Blood tests showed high inflammation markers ,hand x rays showed Osteopenia.
A visit to a Rheumatologist showed high inflammation activity around the joints of wrists ,fingers ,toes and ankles but no bone damage, ultra sound scans.
Further x rays all so show no bone damage, yet.
I was given a steroid injection and put on a DMARD,to slow down the auto immune system, to prevent damage to the bones.
klynn
 
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ebethc

Senior Member
Messages
1,901
@klynn52

I have not been dx w RA, but I have always had terrible joint pain and stiffness.... The only thing that helps is Wobenzym... It's really been a wonder supplement for me.. Have you tried it? Go read the reviews on AMZN.. It's pricey, especially b/c I require a high dose, but you can order it, try it, and send it back if it doesn't work.. there's another product called Vascuzyme by Ortho Molecular that has the same ingredients but is higher quality, but it's also higher priced..

2nd, there's no shortage of dietary recommendations for immune patients, so you've probably read about them.. this is an interesting story re immunity & diet that I've read lately... http://mikhailapeterson.com/about-me/
 
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Cindi

Senior Member
Messages
229
i have been diagnosed with RA on top of CFS, I wonder if there are others who have the same problem? how do you handle it?
 
K

klynn52

Messages
11
Hi Cindi,
How do I handle it? Not that well really, its just been my norm though, dealing with health problems and not really finding any answers too quickly..so the only option I had was to just carry on the best I could.
I think a person gets used to the fatigue, the pains etc...and when it's not knocking you flat..you just have to cope.

I've not worked for some years, because of CFS and mental health issues, anxiety and panic attacks, so maybe I've had the luxury of finding my way through slowly, but it took me over 20 years to get CFS under control and then more relapses followed.

Trying to relax and stay in control of things is always a good thing...but I managed to fail with that at times...and it beat me down on a regular basis, but I just get up and carry on..like most people do.
Now I'm just happy that this RA diagnosis has helped me understand some of the symptoms I had/have...so I feel better in a weird way..because it cant be passed of as just something that alot of people dont think is real...like CFS/ME or mental health problems.
No one wants a diagnosis of RA or any other autoimmune condition, but at least it helps put some of the symptoms and unknowns into perspective.:)
 
C

Cindi

Senior Member
Messages
229
klynn52 said:
Hi Cindi,
How do I handle it? Not that well really, its just been my norm though, dealing with health problems and not really finding any answers too quickly..so the only option I had was to just carry on the best I could.
I think a person gets used to the fatigue, the pains etc...and when it's not knocking you flat..you just have to cope.

I've not worked for some years, because of CFS and mental health issues, anxiety and panic attacks, so maybe I've had the luxury of finding my way through slowly, but it took me over 20 years to get CFS under control and then more relapses followed.

Trying to relax and stay in control of things is always a good thing...but I managed to fail with that at times...and it beat me down on a regular basis, but I just get up and carry on..like most people do.
Now I'm just happy that this RA diagnosis has helped me understand some of the symptoms I had/have...so I feel better in a weird way..because it cant be passed of as just something that alot of people dont think is real...like CFS/ME or mental health problems.
No one wants a diagnosis of RA or any other autoimmune condition, but at least it helps put some of the symptoms and unknowns into perspective.:)
Click to expand...

"Now I'm just happy that this RA diagnosis has helped me understand some of the symptoms I had/have...so I feel better in a weird way..because it cant be passed of as just something that alot of people dont think is real...like CFS/ME or mental health problems." i share your opinion on that. I feel the same :) One of my doctors also told me that i probably had ra long before it was diagnosed and it depleted my adrenals giving CFS like symptoms.. Don't know. Can you tolerate RA medication? Are you on any? I could not dare to try biologics. i am on plaquenil and low dose delta cortril .
 
K

klynn52

Messages
11
yes, I'm on meds, the first one I didn't find good, I couldn't take it after three days, no major symptoms though, so it got changed to another DMARD, and it's not too bad so far...early days yet though... I'm also due to start on another DMARD along with the other one, I am nervous about it...but I've had a couple of steroid injections and I've been fine with those, so fingers crossed. Only low dose though the one I'm on at the moment and only once a week, it's Methotrexate. The other one I'm due to start is Hydroxychloroquine...but that will be a much higher dose...and I'm really not looking forward to it.
 
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ebethc

Senior Member
Messages
1,901
Cindi said:
i have been diagnosed with RA on top of CFS, I wonder if there are others who have the same problem? how do you handle it?
Click to expand...

sorry to hear that... immune illnesses frequently come in clusters.. I have not been diagnosed w additional illnesses, but I have had genetic testing and have many genes for other immune illnesses.. it's the overwhelming "story" in my genes
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3150011/
 
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Cindi

Senior Member
Messages
229
klynn52 said:
yes, I'm on meds, the first one I didn't find good, I couldn't take it after three days, no major symptoms though, so it got changed to another DMARD, and it's not too bad so far...early days yet though... I'm also due to start on another DMARD along with the other one, I am nervous about it...but I've had a couple of steroid injections and I've been fine with those, so fingers crossed. Only low dose though the one I'm on at the moment and only once a week, it's Methotrexate. The other one I'm due to start is Hydroxychloroquine...but that will be a much higher dose...and I'm really not looking forward to it.
Click to expand...
I could not dare to start mtx but i tolerate plaquenil so far and i think it helps.
 
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