Extreme fatigue

[Cindymc]

I am having a lot of issues with being extremely fatigued most of the time. I'm on sulfasalazine and it has helped with the joint pain but It hasn't helped the fatigue. Even when I wake up in the morning I am so tired and it takes everything for me to get out of bed. I'm still working and try to keep up with all of the daily tasks but it's so hard. Most days I just want to sleep or rest but I can't. I've talked with my rheumatologist about it many times but he ignores me or brushes it off. Today I had an appointment with him and emphasized with him how tired I always am. He told me it has nothing to do with RA or lupus, that they don't cause fatigue. I've read lots of forums that say otherwise and I'm convinced that it is from the RA and Lupus. I also feel really weak. He told me to stop the sulfasalazine for a week even though I told him I was afraid to stop taking it because whenever I miss a dose I can tell and I start experiencing more issues. He didn't seem to care about my concerns. I'm so frustrated.

[Barrister]

I'm so sorry that you feel so rotten. I've found that my fatigue comes in waves. I've been (relatively) okay, fatigue wise, recently but I've been soooooo tired for the last two weeks so far. Is it possible that you could see a different rheumatologist? Yours doesn't sound a very sympathetic person - certainly, we all know that RA, PsA etc ALL cause fatigue and then the medication also causes it. I don't know where your rheumatologist gets his knowledge from! I'm not really being much help but you sounded so down that I just wanted to let you know that what you are feeling is normal for us. Clemmie x

[Cindymc in reply to Barrister]

Thank you! Yes I am currently researching new rheumatologists to change. I've been unhappy with him for some time but this last visit made me really feel like I cannot go back to him. I really question his knowledge and I feel like I'm just wasting my time with him. It's so frustrating.

[Simba1992]

This may be something of interest for you and I believe for many suffering of fatigue on this forum. It is a well known fact that those who suffer from RA have a ongoing stress in HPA axis which results in adrenal fatigue. This link tells you more.

adrenalfatiguesolution.com/...

[Ali_H]

Hi Cindy,

Is there any way you can take 3rd person in with you - a family member or a friend as the presence of someone else can change a 'duff' attitude. They don't have to say or do anything and you carry on with your consultation as usual asking your Qs etc.

All the best

Ali

[Cindymcloughlin]

Hi Cindy,

I have had similar problems. I used to tackle it with day time naps, but instead now I am going to bed early and trying to have a long night sleep which seems to really help more than naps. I also really have to pace myself. Not have too much in the diary. Have you read the spoon theory? It was written by a person with lupus describing their fatigue to others. It helped me. You can google it. It is short. I am on sulphasalazine too but I think its ra that causes it. If some one had a cold the whole time and their immune system was busy the whole time they would be tired too. A Physio should be able to advice you re pacing and fatigue management. Maybe your consultant would refer you?

Good luck.

From Cindy mc

( PS we are name twins it would seem!!!and symptom twins, who'd have thought it!)

[Hidden]

Hi - I too have extreme fatigue but unlike yours, my rheumatologist does acknowledge it as a major symptom of the disease process. I was originally diagnosed with RA by a different rheum and he always queried this in his clinical letters, having seen me in related official volunteering roles and assumed I could not be as severely fatigued as I claimed to be! The poor clot obviously didn't have any insight into how much planning and prep goes into doing anything if you're suffering from systemic inflammation. And the aftermath of this work is usually horrendous too.

However last year I was rediagnosed with primary Sjögren's (I have neuro symptoms and my inflammatory arthritis was non erosive plus +ANA - so they took a lip biopsy which was 100% positive). Fatigue is a very well established feature of Sjögren's - although it should be for all autoimmune diseases of course. But it is the only aspect of primary Sjögren's that people suffer from almost without exception my rheum explained. For me I think it's the constant battle with dryness and my neuro symptoms that floor me these days. I'm also an insomniac but even after a good night's sleep or afternoon rest I feel exhausted. I take a high dose of Mycophenolate and have queried to my GP whether this is making it worse but she says it's my high inflammation levels rather than the immunesuppressant.

There was a radio 5 live programme with the UK's Sjögren's expert, Dr Liz Price, and a young former judo pro and a male choreographer plus the head of the BSSA all confirming this the other day. All had very different presentations of this disease from each other - but all complained of very severe fatigue. Dr Price said that it's the most debilitating symptom all of her patients complain about. info.sjogrens.org/conquerin...

[bella-bailey in reply to Hidden]

Hi Twitchytoes, really found this article interesting but does this only apply to primary Sjogren's I have been diagnosed with Sjogrens Syndrome 2 by my Rheumatologist and have all of those symptoms but also in April diagnosed Chronic Fatigue with the Rheumatoid,totally knocked off my feet?x

[Hidden in reply to bella-bailey]

Well I am not an authority on the biochemistry of our diseases of course - but Dr Price did say on the radio that there was a slightly different chemical process going on between primary and secondary.

However as far as I'm aware primary is only called this because it's your first rheumatic disease so really you could have very mild or well controlled RA but very severe Sjögren's and it wouldn't matter a jot whether they classed it as primary or secondary! The main purpose of distinguishing seems to be because it's much harder to tell which systemic disease is causing which particular symptoms and signs if you have several diseases. I do know that having primary Sjögren's significantly increases the risk of non Hodgkins Lymphoma though.

However I do feel that if you have a firm diagnosis of any of these diseases then any chronic fatigue will be part of the disease process rather than a condition in its own right. And probably many who are diagnosed initially with ME or Fibromyalgia will actually have some form of autoimmunity that hasn't yet shown up in the bloods.

But that's just my own personal opinion - very much supported very much by my present rheumy, my neuro and my GPs though!

[bella-bailey in reply to Hidden]

Ty I was diagnosed 19 years ago with Rheumatoid,which has caused other illnesses over the years rheumatoid is aggressive only diagnosed with Sjogrens syndrome 2 last year the only way I could explain in to Dr was that every orifice was dry the eyes and mouth more so but you and the information has given me food for thought x

[Hidden in reply to bella-bailey]

No problem. It's world Sjögren's Day today so a good day to raise awareness I guess! For some Sjögren's manifests in nervous system like MS or in digestive system like IBD - it's a hugely variable disease with many unique and non classic presentations and often goes undiagnosed - or people are diagnosed purely because of dryness and have no idea that it can be such a multisystem disease. Here's the main info page for marking today as World Sjögren's Day: info.sjogrens.org/conquerin...

[bella-bailey in reply to Hidden]

Ty Twitchyt x