Possible RA diagnosis, but chronic fatigue is killing me!
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4 months ago I awoke to painful shoulders during 5 days in bed with Flu, the pain increased quite rapidly, I went to see my GP between Christmas and new year, who said I had frozen shoulder...beginning of January I had steroid injections....at that point the pain accelerated......stabbing, burning, weakness in arms and hands, both shoulders throbbing, occasional aching and stabbing in elbows and knees, also the toes on both feet, just the ones next to my little toe get inflamed, red and painful....had red marks appear over shoulder joints also and now my neck is effected....oh, also during this time a lump appeared in my armpit (seeing GP about that next week). 2 weeks ago I went for X-rays, joints are fine, so ruled out frozen shoulder, but had blood taken so now being tested for Rhumatoid Arthritis, no results back as yet (been told it may be Reactive A as had that 19 years ago, again, after a bout of flu, but nowhere as bad as this) what's getting me now is not just the pain, but chronic fatigue...after I have mustered up the energy to do what I need in the mornings, by midday I am literally crying out for my bed, and days im not working, I'm sleeping. If I need to go out anywhere I literally have to psyche myself up to get motivated and it's horrible, just horrible, I'm pale in the face, dark circles around my eyes, I look awful ......haven't had any medication offered as yet as I'm intolerant to NSAIDS, so battled through this for 4 months now, but tbh, I can't go on much longer....the doctor I saw at the hospital said he'd refer me to a Rhumatologist, but warned that he may choose not to see me!!! Basically, is the chronic fatigue a symptom of Rhumatoid Arthritis, and how the heck do you start feeling normal again? Xx
0 likes, 12 replies
tony35673 lydia45630
Posted
don20517 lydia45630
Posted
My rheumatoid arthritis was diagnosed back in spring of 2014. Chronic fatigue has been a constant companion since that time. My RA is rather severe, I found out how severe it could be back in October of 2016 when I had to be off all medications for ten days to have outpatient surgery for something unrelated to RA. Two days after surgery, every joint that could move a few days earlier was now extremely inflammed and without much movement. These areas incuded my neck, back, shoulders, elbows, wrists, hands, fingers, knees, ankles, feet, toes, and even my jaw. It was almost too painful to eat for a couple of days.
I am on a once weekly injection of Methotrexate 10 mg and also Enbrel 50 mg. Both of these medications help with the inflammation and pain and have given me my life back.
However, the Methotrexate also has a way of adding to the chronic fatigue, but once I was on it for a while, the fatigue eased up a little bit. Family members may not understand or certainly comprehend what the pain and fatigue of RA feels like, so try not to let the misunderstanding of others get you down as well.
Let me know how things go for you,
Don
lydia45630 don20517
Posted
It's extremely frustrating, I'm normally very hyperactive and yes, family just think I'm being lazy, but they don't see the tears or feel the effort that goes into daily activities, starting from getting dressed in a morning.....I love my job with a passion too (run a Butchers) and that is physically demanding work, I cannot say to by boss that XYandZ causes pain so I can't do it, I'd have no job otherwise!!...so you battle on regardless, anyway, 2 more days and I'll have answers...thank you x
don20517 lydia45630
Posted
I know it is tough, especially when people do not understand. My wife is clueless as to the pain and discomfort I have experienced in the past, My daughters understand more than she does. My son really does not understand either.
I thankfully have not had to miss any time from work due to the RA, but there where many times in the past, before methotrexate and Enbrel, when I came close. Two days after the surgery mentioned in my previous email, if it were not for the methotrexate and now the Enbrel, I would not have been able to return to work, as my body was in far too much pain.
Because of these medications I was able to even enjoy two days of cross-country skiing back in December on Christmas Eve and the day before. I am not able to ride a bike any more because of the pressure put on my wrists and hands while riding, so I cannot enjoy this activity any more. I am trying to save money toward the purchase of a recumbent trike as one of these would allow a comfortable ride for exercise once again.
Even on medications though, I have had to change the way I do things and even stop doing some activities all together. Not sure if I will be able to have much of a garden this summer, which is one of my favorite summer time activities, because using my hands too much can bring on a flair relatively quickly. In fact, it was in 2014 after a day of working in the garden that my horrible signs of RA reared its ugly head in my body. I was hardly even able to move my hands and fingers after working in the garden back then. This was the first sign I ever experienced for RA.
Take care,
Don
lydia45630 don20517
Posted
I've just come back from the doctor...the blood results didn't come to them, but straight to the rheumatologist so she's going to contact the hospital today to get the results herself...very frustrating. Can symptoms come on fast?...woke up yesterday morning with pain and stiffness in my knuckle, palm side....I'm like "what on earth is happening to me " .....still no pain relief as of yet!
don20517 lydia45630
Posted
My experience with RA is that it can come on at any time. I could be walking without any pain, then all of a sudden one of my ankles will be in so much pain, making it very difficult to continue the walk. I have gone to bed fine, without any pain or swelling, and woke up a few hours later hardly able to move one or both of my hands. RA can be a nasty beast, inconveniencing many parts of life, sorry to say.
Don
lydia45630
Posted
Well, blood tests in...negative for RA antibodies, gout, bloods all normal etc etc.....completely deflated and teary....just don't know what to do now....I haven't the strength nor the energy to fight this!....3 years with chronic back pain and 2 bulging discs, 2 vertebrae going "soft" as the doctor described it "but nothing to worry about lydia"...now 4 months of intense shoulder, arm and neck pain and chronic fatigue !!....is this what I've got to deal with for the rest of my life?!?!?!.....suppose one just better knuckle down and do the best one can! 😢
louise_77823 lydia45630
Posted
Oh I'm so sorry that the tests didn't show anything. This is what worries me the most about getting my results back! The what if they don't show anything and where do you go from there. The pain is very real and hard to deal with on a daily basis. Did the doctor offer any help with pain relief? Is it worth pushing for a referral to a RA consultant and then go from there? From what I have read having a negitive blood result isn't conclusive of not having RA. Hope you get the help that is needed asap.
lydia45630 louise_77823
Posted
I got no offer of pain relief or substitute for NSAIDS....had a bad flare up later that day and my husband rang the surgery and insisted a doctor rang me....I got Naproxen which is the NSAID I've had the least reactions too....I was still up that night with chest pains from it though....I was on the verge of total give up until my husband stepped in x
Gloria814 lydia45630
Posted
That's awful for you. Are they going to refer you to a rheum. MD? They should. I had to have my diagnosis confirmed with hand xrays and then MRI of my hands. I have had several blood tests and almost always totally normal esp in the beginning. you should not be forced to suffer in such pain with just NSAIDS. Insist on a referral. Good luck!
lydia45630 Gloria814
Posted
don20517 lydia45630
Posted
For many months after being diagnosed with RA, the only medication that would do anything to provide relief from the inflammation and pain of RA, before Methotrexate and Enbrel, was Prednisone. NSAIDS, including Naproxin, would not even begin to take the pain and swelling away. I do not like being on Prednisone, just like I do not want to be on Methotrexate and Enbrel, but sometimes we have to take medication we do not want to take to get relief. Prednisone worked for me.
Hope this helps,
Don