Just wondering what other peopleās journeys have been like .. Iām stable brain wise according to my mri which is obviously great
But I just feel so run down all the time
I mean is this it am I going to feel this way forever headaches joint pain tried brain fog feeling like I have a lot in my throat constant tight muscles šŖ
Iām on hydro 200mg once a day and I know Im not as bad as others but itās making me miserable š Iām just too tired to enjoy anything no one gets it
Just wondering how everyone gets enjoyment out of life feel like Iāve been like this forever xx
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Buckley123
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I think itās fair to say that it is normal to feel this at times.
Iāve been on hydroQ since January and only recently I have really noticed the fatigue lifting and brain fog easing off but il be truthful itās never completely gone.
Iām still in a lot of pain and still struggle but I donāt think I sleep too great which isnāt helping.
I often find itās ok to hit rock bottom or a low point because from that point thereās only one way up š
Have you considered a pysical therapist or a medical personal trainer for your bodily pain and weakness? A Speech pathologist can help with brain fog and concentration issues. Brain game apps like luminosity, crossword puzzles, scrabble all can help as well. Have you asked about a sleep study to rule things like narcolepsy and central sleep apnea out as causes of fatigue?
I also can not stress how often lupus fatigue is a result of our state of mind not antibodies. Being chronically ill comes with a lot of risks for depression and anxiety. Therapy and drugs aimed at improving anxiety or depression are proven to help lupus patients' fatigue and to greatly improve our quality of life. To be frank there is no cure for this disease and the treatments really mostly help organ attacks, not the non specific symptoms like fatigue and brain fog. Behavioral health is far more successful at treating those symptoms in chronically ill patients.
I felt like you do for far too long and until I accepted that it was not going to be fixed by a little pill and that my only hope to begin life again was to work with what I could. Diet, mental health strategies and physical exercise have turned my life around while the meds help extend it. Acceptance that I might never be cured forced me to find a way to enjoy life still even when very ill.
The other day when I did not want to take my walk because my knee cap had slipped out of place but my orthopedic doctor said walking was still ok just be careful on stairs. So none the less I forced my self to at least try for five minutes. I ended up going for over an hour because after the initial horrible pain it actually started feeling better! And I saw a double rainbow while walking.
That first step is always the hardest but sometimes just getting started again with your life and really trying to ignore what is wrong and look for what is right can give you back some joy even in the mist of terrible struggles. Honestly taking it easy and giving into fatigue can make us linger in illness while sometimes ignoring non emergency symptoms with distractions can help us.
I never push too far but I walk slower and take on less hills if I am not feeling my best. But if when I am achy or have a headache and I skip my daily walk altogether I still ache and have the headache at home on my couch so I think might as well stroll slowly with the pain and then I actually feel better because my focus is not the headache. It is taking that first step that I always find a struggle but once i take it I rarely need to turn around and stop my walk after all. I was inspired when it was pointed out to me that marathon runs do not have less pain they just are able to carry on through their pain. So I am now trying to learn that resilience. Xo
Iām actually going to ask my neurological for a sleep study. Iām so intune with myself but I can not stay asleep without medication. Iāve said for years something is waking me up! It could be pain or something else but I do no Iāve tried everything in the book to encourage a good nights sleep x
There is a strong link to central sleep apnea and chronic inflammation and many cardio and neurological diseases. Apnea does not always mean snoring. You can have it with out snoring too. I hope you are able to get one!
I think inflammation is the cause of all disease! Controlling it is key but sadly it is often hard to definitely find it. It certainly could be caused by poor sleep quality. And maybe better sleep will be able to help reduce inflammation over time too. Good luck sleep is so important and so hard to get
You have to be careful not to conflate the presence of auto- antibodies and the titer with disease activity. Doctors use a variety of measures to determine how sick a patient is. That is way above even most doctors to monitor. But a rheumatologist knows what to look for. I think, with a few exceptions, the antibody titers are not helpful.
My experience over the past thirty-five years is that the worst thing I could do for neurological symptoms is exercise. Coffee can help a little bit. The brain is a weird thing. Everyone is different.
With neuropathy or Pots where heart rhythm, blood pressure and oxygen are at risk I think exercise needs to be carefully modeled to the patient that is certain. Same with heart issues or any organ disease a doctor approved exercise plan is always wise. Same as diet or med changes always talk to a doctor first.
Staying as conditioned as possible is important for POTS and other forms of autonomic dysfunction. It is challenging, but essential. For atypical migraine and the weird stuff presumably caused by anti-phospholipid antibodies and others I think exercise just jostles the brain and increases nausea. I am going to try Zofran to see if that helps with the nausea.
Hope they continue to learn about the more subtle neurological issues in autoimmune disease. They can impact quality of life.
I am convinced that my APS settled down after I started exercising regularly. My headaches have improved during that time too but I had an pfo with an atrial anyerism, which is known to be linked to the type of aura I would get and so the closure might have worked to prevent the right to left shunt I had from sending micro particles to my brain before they were filtered first by my lungs. I have not had a scintillating scatoma since my pfo closure!
I am a believer that trauma, physical or psychological, creates inflammation first than our bodies start to over respond to that inflammation by creating antibodies to attack it than we aquire autoimmune disease and so the inflamation cycle keeps going around and around. More than 70 percent of autoimmune disease patients have a history trauma ( physical or psychological) before disease and also metabolic syndrome and cancers are also known precursors to autoimmune disease. I think inflammation is primarily the cause not the result of our disease.
It is still a case of which came first, the chicken or the egg, but the fact that inflammation from trauma, metabolic syndrome and cancers often precede autoimmune disease and that early treatment for PTSD is actually preventing lupus in studies on veterans strongly leans me towards the side of inflammation comes first not second. The link is still only known as correlation not causation and more studies are needed so I know I could be very wrong but I know that after I was able to lower my CRP and sed rate, with both drugs( statins and aspirin) and lifestyle changes I felt better and my APS and lupus seem to have settled down as well. Anadotal and early results so it could be just I am having a remission and it might flare again even when keeping my lifestyle changes but I am hopeful that keeping other inflammation risks at bay will maintain my remission as long as possible.
There is no question that exercise and diet are important. We just have to be careful extrapolating from our own personal experiences. Though I have to exercise and am on a strict diabetes and cardiac prevention diet, I have never noted any effects other than with my A1C. The sickest I ever was was when I was young, didnāt know not to avoid the sun and kept trying to do sports but could not.
Food science is mainly bologne right now ā impossible to do good studies. With that in mind, it is probably true that we should not eat much processed food, including Bologne. It is good that research is being directed toward finding the best diet for autoimmune disease. If you have ever seen a really sick teenage lupus patient in the hospital, you would know intuitively that diet and exercise did not directly cause and will not help her lupus. The focus is to get her to eat anything because she is too ill have an appetite. Exercise is only the physical therapy sessions when she medically approved. I know your experience was devastating. I wonder if you confuse the life-threatening experience of stroke - a byproduct of lupus - with a systemic flare of the disease. The teenagers I witnessed with severe lupus were hospitalized with fever, inflammation in major organs, or on dialysis from kidney damage. As I said, your experience was devastating. But it may respond in a different way to lifestyle changes. Someone with ongoing low level inflammation or someone in a period of high inflammation may not respond in the same way. I think of it as like the Ā«Ā fluĀ Ā» but with no virus.
I am just urging for a little perspective on the multi-factoral causes of autoimmune disease. It is safest to just say that a combination of genetic and environmental factors seem to cause autoimmune diseases. But if we are going to use anecdotal evidence for stress and diet to be a major influence, then we can also point to the opposite. Anne Romney, who has multiple sclerosis, appears to have been the epitome of a healthy-eating, sports doing, wealthy person with children and a supportive husband.
Because Ā«Ā you feel convincedĀ Ā» your APS Ā«Ā settled down after exercise is only your feeling. The headaches may not be APS-related, may have gotten better because of the change of weather, or because of another medication. It is good you notice a change and good to exercise. But we cannot assume anything. They know very little about what is happening with neurological complications of autoimmune disease. And, from what my neurologist says, at least with me, the evidence in effective treatment is not in the near future.
A healthy life style is a must for everyone with chronic illness. I am just advocating for a little caution. It is not likely to cure our autoimmune disease.
I agree with much you write but it is now known that maternal inflammation effects children in very adverse ways. Maternal smoking and drinking is a cause of infant inflammation and disease. High maternal CRP, c- protein and s- protein are linked to childhood seizures, lupus and autism. Maternal diabetes also alters a child's future as well. Also maternal viruses or childhood viruses cause inflammation too and often also precede disease. Epstein Barr and strep seem to precede cancer, mental illnesses and autoimmune too so yes inflammation is not alway life style choice influenced but does seem to precede disease not always caused by the disease.
Epigenics is amazing. Our own genes can be altered by viruses, allergies, smoking, drinking, eating, and worrying too much as well as change the course of the future generations as it turns out. So still, even in young patients a history of trauma or inflammation ( maternal) often precedes disease it seems.
Want to add the sun reaction to me is again a link to inflammation coming first. The sun inflames our skin, i.e. Sun burn. So firsts your skin becomes inflamed than the autoimmune system goes into over drive and the endless cycle of inflammation causing more inflammation begins again.
I think that is what is speculated. The damage ā not just from sunburn ā but from minimal damage from UV radiation sets off the inflammatory response. But I do not really see your point. Again, you cannot extrapolate from this aberrant photo reaction in lupus patients to other immune responses. They have been studying lupus photosensitivity for years and still are not clear about the mechanism.
When I read your sun analogy it sounds like you think if we could just get these pesky inflammatory foods out of the way and increase endorphins, this Ā«Ā cycle of inflammationĀ Ā» will stop. It seems you are forgetting that people with lupus have big deal auto-antibodies to their own cells. These may precede the disease by years. This is not normal.
I just think a little perspective and appreciation for the aspects of autoimmune disease that we cannot control is as important as trying to live our healthiest life.
May be true. Lots of bad things cause inflammation. We should not smoke, drink too much or do all the fun stuff I do. But we will probably never be able to prevent disease. Yes, it is all amazing. But it is all unclear. And even if we understand it, there is only so much we can do.
We have to be careful not use studies to imply that people have somehow caused an illness like lupus or cancer. It will never be like smoking is to lung cancer. Maybe I am wrong. Being calm in pregnancy, not drinking martinis and going for check ups is probably good. However, assuming people have lupus because their mother was nervous is not rational or helpful psychologically.
Thinking we can control everything becomes its own problem.
Oh I assumed by saying physical trauma, cancer and virus in all my inflammation posts examplified that I do not blame patients for their inflammation and I know it is not always in our control sorry if that did not come across.
I also am a proponent for pharma help, especially with brain inflammation and organ involvement. I just think that after the virus, injury, or organ nflammation is healed and inflammation is medically controlled there are many ways to naturally work to keep excess inflammation at bay and by doing this increase our remission durations hopefully. And as Buckley seems to not being offered many options other tha HCQ to treat her inflammation symptoms I wanted to give ideas to try in the interim.
I think we are in agreement here. I said the same thing to Buckley. Her neurologist needs to know how much her symptoms are impacting her.
As I said before, the antibodies affect the brain in ways other than inflammation - inflammation is life-threatening and rare - but there are ways to help.
Wish there were an educational session on the neurological aspects of autoimmune disease for patients.
Your theory may tie in with this statement in an article on NPSLE: Ā«Ā In order to enable auto-antibodies to penetrate the brain and cause their pathogenic effect, the blood brain barrier must be breached. Different environmental factors, such as infection, stress, and ischemia, mediated by inflammatory cytokines, may damage the BBB in different anatomical sites, thus further contributing to the variety of neuropsychiatric symptoms.Ā Ā»
Not sure I understand exactly what it means, but is sounds like it takes an added stressor to allow the antibodies to do their damage.
The article is Ā«Ā Neuropsychiatric lupus: A Mosaic of Clinical Presentations
If you call heat, humidity and a cardiac stress test Ā«Ā stressor,Ā Ā» then they didnāt help my weird head this past week. š«
Exercise is certainly a stressor! It is similar to how vagus nerve stimulation helps strengthen HRV. Exercise Stress and stress recovery strengthen the natural autoimmune balance. Hunger, socioeconomic issues, extreme cold, social isolation, injury, allergies, smoking, are all inflammation causing stressors known to breach the blood barrier .
it is how well our bodies adapt to stressors that makes or breaks our illness. A higher HRV is linked to healthier people for this very reason. Recovery is faster in resilient bodies.
This is the paper that I read last December that changed my life. It formed my beliefs about inflammation causing disease. There is a very good section on autonomic function too. It's author, j Bennett, has many other papers that opened my eyes too. Take a look. It is very informative and she explains it all so much better than I. frontiersin.org/articles/10...
I feel the same too. Been lucky this past month as been onsteroids and felt good until now as had to taper 5mg per week. Aches and pains and everything else coming back. Nice to feel a little normal for a couple of weeks. I had a bad sjogrens flare as I have fibromyalgia and sjogrens disease. I felt like a wilting flower, slowly dying. Unfortunately steroids is just for s bad flare and can't stay on them. I know how you feel. My body feels so much older than it is and my mind. Sending hugs and you are not in your own. Xxx
Steroids work by reducing inflammation and quieting down the autoimmune inflammatory responses. Stress, sedimentary lifestyle and western diets are the most known causes of chronic inflamation. Just as life style can cause inflammation there are holistic lifestyle changes known to Sucessfully lower it. A diet rich in fiber, omega 3 and antioxidants, meditation and regular low impact exercise ( walking, yoga) all work too naturally lower inflamation. While on your next steroid round try adding regular exercise and fiber to your routine and maybe if you keep those changes going after your round of meds ends you will find the inflammation can stay at bay and the pain and fatigue will be less too. Xo
Hi there. I know exactly what you mean. I can't remember what it's like to have a day with no headache, or fuzzy brain or stiff and sore everywhere and stuck in the house not doing anything. And even though I know there are things I could be doing, as well as docs & meds, it's so hard to do when you feel so horrible and then have to use what little energy you have looking after family or working.
I recently spent an afternoon with a friend who has had ME for years and she said a few things that really stuck with me. She said she has trained herself not to focus on what her body does wrong or can't do, but to think about all the amazing stuff it still can do. And she said that even on her terrible days she made sure to just walk round the garden for 5 minutes just to leave the house. So I try to just walk round the block for 10 minutes as many days as I can. My hubby comes with me when he can too. They're small things but at the minute they really help me. The bigger diet and lifestyle changes will come when I'm ready to take them on but for now it's just little steps (with very sore feet ;-).
I'm not sure if this helps much as tbh I'm new to this and only finding my own way through the bad days. But everyone here is rooting for you too. Xx
I think you are struggling with some really hard symptoms. The neurological aspect of autoimmune disease is very difficult to treat. Unlike kidney disease, they do not understand the pathological processes. The brain is pretty complicated. From what I understand, the new thinking is that auto-antibodies cross the brain barrier and damage in various ways. People with certain syndromes do better on medications that thin the blood. Some do better on a combination of migraine medications. For really bad periods the only thing that has made a dent in my symptoms is low dose steroids. That is probably controversial, and I suspect there are no good studies to shed light. Tell your neurologist about your chronic headaches. I know they will try to help you.
Youāve got GREAT replies, so nothing i can usefully add except maybe to offer up a bit of my own story:
Several years ago when my v early onset chronic dysautonomia+ neuro cerebral manifestations & debilitation werenāt responding pos enough to decades of conscientious self help + lifestyle techniques + body therapies and had only responded ājust enough to be v encouragingā to daily hydroxychloroquine + 4 week 10mg prednisolone tapers during flares, i was thinking like you: is this it now then?! I felt v disappointed & demoralised and hopeless
But a wonderful LUK forum friend urged me to ask for a trial of mycophenolate: my lupus expert rheumy clinic promptly agreed and 1000mg myco daily helped so much in combo with daily hydroxy + daily 5mg pred that i had more stamina & resilience + less multisystem manifestations flaring than iād had since my teens...felt miraculous & still does! of course i do have relapses during tough times (surgery, infection, injuries & whatever) & for sure i continue all the self help...but i love being on the right combined therapy treatment plan + having good contingency plans for dealing with flares
Hope youāll keep us posted ā¤ļøšā¤ļøš Coco
PS i have hEDS + my āmoderateā grade SLE is infant onset but went without systemic meds till my 50s - iād been relying on life style management + A&E + GP & pain consultant treatments etc until debilitation had progressed so much the NHS figured my AID out & we recovered my infancy lupus diagnosis. I also am sero neg due to an early onset bone marrow disease, but thatās another story
In the final analysis lupus and the systemic autoimmune diseases are examples of serious aberrations in immune response. That is my opinion. In a healthy person diet and sedentary behavior may cause inflammation. But in autoimmune disease the inflammatory reaction is fierce and self-attacking. That is not the same as a middle aged man with bad habits who has subtle increases in inflammation that may ultimately cause diabetes and heart disease.
So with you, BC, it is not surprising that the steroids and immune suppressants made a big difference in your ability to function and enjoy life. You mention the ācerebralā aspects. These are known to negatively impact quality of life in lupus patients. I wonder if you noticed a difference in your neurological symptoms? I have always gone behind my doctorsā backs and gotten a prescription of prednisone for when I had symptoms during an important life event. Wow - it was like taking a dust buster to my head. Now, my doctors did not want to use steroids as ādust bustersā but I have now gotten approval from my neurologist to use low dose prednisone for brief periods. Not the usual treatment ā already on migraine prevention and tried increase of daily aspirin ā but I hope it will allow me to enjoy special events and not do much damage. One of my arguments - had I needed to use it - was going to be that losing out on wonderful memories had to be included in the risk-benefit analysis.
I am so happy you finally got effective treatment. Your intestinal failure is just one more example of the damage lupus can do. I am only now starting to get the difference between ādamage doneā and āactive inflammation.ā When the nerves are gone, they are gone. Well .. IVIG May rejuvenate them in autoimmune cases, right? Hoping!
Rambling on .. but I relate to a lot of what you said.
Yes prednisolone is KEY to managing my dysautonomia + all my neurological signs & symptoms inc the neurocerebral....these all started in childhood and have become progressively worse ongoing.
I actively avoid referral to neurology because of terrible experiences being tested for MS in the 1990s. my rheumy says that as long as lupus meds damp my neuro stuff down so effectively, there is no need for referral to neurology. Iāve had this confirmed by a top research neurologist i shanghaied after his talk on neuro lupus a few years ago
But who knows if my lupus meds can repair any of the multisystem neuro damage done during decades of symptoms worsening while my SLE & co were inadequately medicated. My hope is these meds can at least slow damage progression. But, as i understand it, the precise implications of hEDS re GI debilitation are only beginning to be understood...so there are no official treatments for this aspect of my probs
During the 5 years of finally segueing from intestinal insufficiency into failure, we spent 2 years trying to taper me down from 10mg to 5mg pred and failed because ALL my multisystem symptoms (especially neurocerebral, dysautonomia & GI tract) flared too much.
Interestingly, one side effect of staying on 10mg pred while going onto longterm EEN is that my malabsorption has reduced enough so i get even more bang out of all my meds...which seems to make it easier when i have to pause myco (Since 10mg pred became my daily therapeutic dose long term, iāve had to pause myco 3 times: during the first most severe bowel obstruction projectile vomiting crisis that resulted in going onto EEN, AND during post spine surgery wound healing, AND now during complex persistence pattern shingles)
At no point have any of my medics even vaguely suggested maybe we need to also pause my pred, thank goodness...but i am getting great monitoring + for stuff like my osteoporosis etc etc, so š¤·š¼āāļø
Thanksā¼ļø Youāve done me a BIG favour by giving me a prompt to think this over
Hope something in there is useful šā¤ļøšā¤ļø
Think little, small steps each day. Find ways to still do and enjoy the things you love but differently. Some days I drive to a seaside, park next to a bench sit on the bench view the view and then go home. Barely moving 10 steps. Another day same drive and a short walk to the ice cream van, another day it will be a longer walk. Adjust the pleasure to your energy but never forego things that make you happy.
Buckley, you mentioned brain inflammation was seen on a scan. Has any one suggested ways to treat that inflammation? There are options that work at reducing brain inflammation. Ssri's, steroids, anti seizure and migraine treatments can work for many people. Getting that inflammation reduced might go far in helping relieve the brain fog and fatigue you are suffering.
No nothing because itās stable he said hopefully the hydro will bring it down.
He did say if it got worse they can do some type of chemotherapy which I donāt want to do obviously š
Iāve got my appointment at guys on Tuesday but Iāve been put under doctor sana apparently heās not so good I thought Iād see doctor d Cruz but apparently not I guess I will no more maybe once extensive bloods have been taken. I get the impression my neuro is waiting for my rem to take the lead xxx
I think Dr Sanna is supposed to be quite an expert on lupus brain involvement and Prof D CRuz will probably still be keeping an eye on you so hopefully theyāll get to the bottom of this.
Chemotherapy sounds scary but itās a lower dose than for cancer and is supposed to be very effective at giving us proper remission. I have lupus with neuro/ brain involvement and had my first chemotherapy a few weeks ago (cyclophosphamide) with lots of steroids and biological. The chemotherapy went fine, just felt a bit sick and tired a few days after but nothing too bad (nowhere near as my pregnancies where I threw up constantly!) My rheumy has wanted me to have it for 2 years but I was too scared but now I wish Iād accepted it before they got to the point of saying thereās no choice as so many people say it makes them so much better.
Have they tried you on high steroids yet? Sometimes that can give a good idea as to whether itās inflammation causing all your symptoms and help decide with treatments.
Really hope you feel better soon. Not nice at all with so many symptoms and still no clear answers xx
Thank you for sharing this with me Iām glad to hear itās good at last š that makes me feel better.
I will take it when Iāve been told itās time itās just the in the mean time feeling crap but not enough for them to intervene. Just on hydro atm they are waiting I think to hear from the god that we all know as doc d CruzšŖ
Iām okay today so far no headache š¤
Yet
Not keen on the weather mind.
Even tho I donāt get many rashes my skin burns with out turning red itās so weird
I hope your appointment with Dr S. Offers some treatment options. Burning is another inflammation response, like rashes are. It is a sign that your body is overly reacting to the sun stimuli and setting off a pro inflammation system of events.
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No Consultant back up now
Lupus now Fibromyalgia
Now the productive tickly cough syndrome !!!
Now Iāve done it, rheum appointment tonight!
