Any help re fatigue

[tcromp888]

I have had sjogrens for 17 years. Ruined my life which was so heartbreaking. Had to end a great career as was just too tired out. I have lost all my own teeth and have endless problems with my eyes. Using Ikervis. The issue for me is that I have profound fatigue. Every day is the same. Just utterly exhausted. My consultant has said some people are like that but I haven’t yet heard of anyone who struggles every day. Does anyone have severe disabling fatigue? I have gastric issues. Gallstone. Hiatus hernia. Severe GERD. Was taking 2400 mgs daily of Ranitidine daily up to being banned. Can’t take Omeprazole etc as allergic to PPis. Get a dreadful rash. Now on Famotidine max dose with a view to being increased. The fatigue means day to day living is immensely difficult. Medical profession are not supportive as they can’t do anything. Anyone else have this issue?

[Evonne02]

Hi tcromp888,

I was diagnosed by my optician in June. I never received treatment for it from my old GP so left my GP practice. I had to buy the nose and mouth sprays myself. Since then I have registered with another practice but haven't seen anyone yet. You seem to have all the symptoms that I have, apart from my diagnosis of a Liver problem earlier this weak. I'm absolutely more that fed up with this acute tiredness. I've even slept for 12 hours at bedtime and I'm still exhausted the next day. It is depressing and I jut cannot see a way out. I do know several people who are just the same and it is very common. Lets just hope that soon there will be an answer. That's how I deal with it.

😍

[tcromp888 in reply to Evonne02]

Thank you for your response. The liver problem could be related to sjogrens. Not sure what it is but PBC is common with SS patients. You need to see a rheumatologist ASAP. The fatigue is terrible and has ruined my life. I am very upset that people with long covid are receiving so much support with their problems which run parallel with auto immune issues. They are not coping after three months with the fatigue how do they think people hack 16 years and more And furthermore no support is given to us at all. I wish you well and hope you get diagnosed properly. There are things they can give you but unfortunately none have worked for me. Stay strong. Be kind to yourself. Sjogrens can be challenging. Always here if you need help.

[travel54 in reply to tcromp888]

Hello,

I want to share my experience. In March 2020 I came down with COVID. It wasn’t serious enough for me to go to hospital. This was before the mask mandate and vaccines. I have been suffering from debilitating fatigue ever since. I was diagnosed with PSS in May 2021. Doctors don’t know if my fatigue is from Long COVID, Sjogren’s or both.

I’m taking Hydroxychloroquine and Pilocarpine for PSS. I’ve been taking Armodafinil 200 mg in the morning for about 2 years, prescribed by my neurologist. It is an awakening medication that is given to people with Narcolepsy. This drug has helped me by reducing daytime fatigue.

I have team of doctors trying to help me with my other lingering symptoms from COVID. Please don’t be upset about the attention COVID is having in the medical world. Perhaps a breakthrough will come for all who suffer with autoimmune diseases. Try to hold onto hope and remain positive. Pace and keep a gratitude journal; this has helped me.

[Katerina1]

Hello, I can really relate to your post. I have struggled with constant Sjogren's fatigue for years as well as agonising small fibre neuropathy caused by Sjogren's, plus ongoing gastric problems. Always feel tired and weak. Lost some teeth, eyes a problem. All the usual things. I agree, it can wreck your life, all the harder in that friends and even many of the medical profession regard Sjogren's as 'just' dry mouth and eyes. Some of the information that's out there gives a similar erroneous view that it's nothing much. I don't know how I managed not to get sacked from my career and even years on still feel guilt that I was unable to give my best.I believe some people take Provigil or Adderall for fatigue, but have not tried it. My approach is to try to make the most of a better day, or even hour or minute but always pace myself. My rheumatologist just shrugged and said nothing could be done for the fatigue. They discharged me into care of my GP ages ago. Frustrating when you remember a full life before. I sometimes look at the 'Sjogren's World' site for ideas and not to feel so alone. Hope others on this site may have ideas for you.

[tcromp888 in reply to Katerina1]

Thank you so much. It’s a very misunderstood disease and sadly those who suffer with other issues like fatigue etc have no one to turn to. I do wish you well. Very hard to keep going but I admire your determination. If only the medical profession would offer some support for us. A GP once told me it was nothing but a nuisance!! How would they like it if you could hold down your job as you are just so exhausted. You take good care. Maybe one day there will be light at the end of the tunnel. Thank you for your kind words and understanding. I feel for you.

[harmony2 in reply to tcromp888]

tcromp888 re “A GP once told me it was nothing but a nuisance!!” I am so sorry! That was sheer ignorance. It can be seriously life-changing for some!

[SusieW2]

So getting the same run around for years with my fatigue, I did some research and tracking down a Naturopath MD. I'm in the US. After checking my blood levels and a trial run, I'm now taking a thyroid supplement and using a testosterone/Progestin cream. I felt a distinct change for the better. He believes that nobody should be "low normal" on thyroid levels. I had also complained of weakness despite exercise and poor sleep. The testosterone also helps with this. And be sure your Vitamin D levels are OKNow, several years later, the fatigue has been increasing. My husband was looking for something to replace the caffeine bump when he had to stop caffeine. He tried Ginseng and reported feeling energy improvement. So I tried it and also find I have less fatigue.

Be sure to work on any other issues that may be affecting your sleep, eat clean and low inflammatory, exercise whatever way you can and try to get in some laughs. Good Luck!

[MichelleHarris in reply to SusieW2]

Completely agree with checking Thyroid levels are good. I dont trust GP’s at all now nor what level they accept as normal and put my results on Thyroid site on here x

[harmony2 in reply to SusieW2]

Hi @SuzieW2 how do you ingest your ginsing? Tea? Tablets? No upset stomach? Is it like caffeine don’t have it in second half of the day? thank you

[SusieW2 in reply to harmony2]

I take 100 mg of ginseng extracts in capsule form, one in the morning and one with lunch. A couple of times I took one later in the afternoon. I can't say that it interfered with my sleep but I do occasionally have trouble sleeping. I'll pay attention. The increase in energy seems more subtle than caffeine but again it's hard to take into account all the variables. It hasn't resulted in an upset stomach.

[harmony2 in reply to SusieW2]

Thank you for your info and quick reply. Sincerely.

[dg70]

So glad but sad to see others are the same as me. I'm years on with fatigue and I've just learnt to accept this is me now. No going back to days out and late nights. It's hard though coming to terms with it. Feels on and off during the day like its 2am in the morning and you just can't go on (that's how I explained it to family). I still don't think they understand. It makes me laugh explaining to ones in their seventies that I have to go for a rest and sleep in the afternoon. I'm on hydroxychloroquine to see if it helps with fatigue and aches and pains I'm three months in and still no change. I also thought I'd try vit b12 as it has been talked about as a help for fatigue but I'm only one month into taking it with no change yet. I'll let you know if either make any difference. We clutch at straws I think but as long as it's done on advice and not harmful I'll give things a go in the feint hope of suddenly waking up from this sleeping sickness and feeling like I should for my age again. 🤷‍♀️

[tcromp888 in reply to dg70]

So sorry for you and I fully understand. I’ve taken B12 for over a year and I’ve been no different. Hydroxychloroquine doesn’t help either. I think there are a few of us with profound fatigue who basically have no quality of life. It’s so depressing. Everything is a challenge and if I try to do things it makes me worse. I wish you all the best for your future and thank you for sharing your problem with me. I really hope one day they find something to help people like us. Take care 🙏

[dg70 in reply to tcromp888]

Same to you. Maybe long covid will spur research into chronic fatigue. We can live in hope.

[SusieW2 in reply to dg70]

I'm having some improvement with Ginseng and no apparent side effects. It's natural. Also check for your Vit. D blood levels. I saw improvement in energy level with increased D.Yes, to some extent we have to just adjust and try to live our lives. Good luck. ❤️

[dg70]

Can't take ginseng because of hypertension and kidney problems. It's only supposed to be taken for a few months at a time or it builds up toxicity in the body unfortunately. I 've been on Vit D supplements for years as I have a deficiency there anyway. I have come to terms with fatigue over the last ten years and my immediate family as used to it but it is still hard to get other people to believe and understand resting several times a day for a few hours sometimes and that I can't go out for the day like normal people without somewhere I can sleep. For some of us our bodies are continuously fighting us and it makes us tired. Only an autoimmune cure will help us I guess.

[smileyface1]

I have great fatigue and have had acid reflux problems for years. I've had to have my esophagus stretched numerous times because I get choked on food. Currently, I don't see a doctor except I do for the esophagus, but I haven't been to the rheumatologist in years. I problably should. My eyes are very dry and I have lost a lot of teeth. I have lower dentures and upper partial. The eyes are always a problem because of the dryness.

[Ford9984]

yes. I have fatigue from it too. I have only been taking it for two weeks and nothing else that’s new so it has to be Ikervis. I’m going to see if I can come off it or take it less frequently but not sure if I can