hi
I have been off work with long covid Fibro and lupus was improving marginally but now all worse symptoms like autonomous nervous system is crazy doc said take more gaberpentin anyone else no what helps apart from resting with relaxing music ? 🙏
I am already on restricted diet GF no sweeteners no alcohol no wheat organic foods, no processed food.
Sometimes even relaxing doesn't help me completely on my worst days. However, aside from relaxing I like to play video games. Once engrossed it's like my brain switches off from the pain for a little while. I only play in short bursts though or my hands end up really sore for days afterwards.
The only hobby I can really do with Fibro is listen to music but not a loud as used to and relaxing stuff that’s one of my targets to be able to play games again Fibro has stopped work and play due to hands and feet with back issues and mobility all affected fatigue affects watching movies 15min stints if lucky glad you found your escape in games love the sound of that thanks 🙏
I find only doing my old job, gardening helps me. I know I have to not overdo it but I get lost in my garden
hi African monkey sounds nice like your in some way meditating while you do it all good 👍🏻 😀
I’ve been really bad he last few days (had been doing well on no really bad bad flares lately), o was wondering about sun / air pressure and the heat generally (athough I tend to find Cole weather the worst). Maybe I was just overdoing it in the nice weather; just seems I’ve less spoons atm.
I find air pressure does affect me and the change in the weather also
I’ve had fibro many years and I also have a keen interest in helio physics so I watch Spaceweather and also check ordinary weather and check humidity alongside heat of the sun. I also take an interest in the moon phases
I have noticed over the years that my fibro flares, are very much affected by all 3 … big flares that are earth directed, approaching full moon and high humidity all have an affect.
Space scientists will tell you that the radiation from the sun won’t affect us here on earth, but I know for sure that ground energy currents are detected in Norway when a big CME hits the earths atmosphere.
We are all part of the bigger picture not separate to it …these things also affect my dog who tends to sleep a lot, maybe we need to watch how the animals cope and follow suit.
I understand your frustration dealing with all these symptoms. I have had to listen to my body for many years and done lots of research as to what could support me . I decided that to keep my muscles strong and make changes to my fitness I had to do something to tick some of the boxes. I started doing chair exercises there are many on YouTube. I started with a few and felt better after doing it for a few weeks.
Once this was a routine I started adding little bits of gardening .
I brought myself a low sitdown bike and use this so slowly to start with and now can do 10mins of exercises. Of cousre there are days I not able to do these exercises . however my body feels stronger .
My mobility is affected by osteoarthritis in both knees and fibromyalgia and I walk with sticks the benefits of moving is my legs and back are stronger.
Movement does hurt however the pain does will ease after a little bit of pushing.
We are all very different and my mindset and dealing with pain levels has been a long journey with ups and downs.
Keep reseahing your illness and build on what you can . Small movements build confidence . Good luck 👍 take care 🙂
Hi Nipper woodystar and davidCB
Thank you for you replies there all good and helpful information it’s great when people share useful advice which gives hope when all we are offered is pills which don’t always help or cause more problems. I am doing physio on multiple body areas and as you say we are overwhelmed easily by pushing too much too soon then burn ourselves out and suffer for days. Thank you 🙏 all 😀
I offen overdo things because I want to do it but my body said No you don't. Your mindset is as important as your symptoms therefore work on that if possible. You sound to me that your already doing your some bits to support you. I took myself of my painkillers in February this year . I took everyday 4 different painkillers and started to research the side effects. Since then I feel less brain fog my head feels so much better and I lost weight with out trying .
I now use a Tens machine and warm oils and fibromyalgia vitamins to support me and Vitamin C They sell them on amazon. I also use magnesium oil spray on my painful muscles. These things might help they may not it pending on how long you keep trying to see if its worthwhile.
Don't take more painkillers if possible look for other ways. My pain killers were not working any more as I had been taking them for years .
Have a go and see the outcome . 🌞 sunshine so lots of vitamin D. Stay safe.
I certainly feel worse when the sun us out. Makes me feel sick and also quite restless. Really struggle to do my tasks when it's so hot because I just seem to have such an intolerance since I got long covid. Wish I could suggest something helpful but unfortunately the only thing that helps me is actual decent pain meds & sleeping.
Hi there. If you have lupus, both UVA,UVB and natural light can adversely affect symptoms because of photosensitivity. You don't always need to go out to react - sometimes being near a window is enough or under certain types of indoor lighting.
Do you wear sunscreen?
I have become quite obviously photosensitive over the past 2 years and at my dermatologist appointment yesterday, I was recommended to try brand Altruist suncream, strength factor 50.
It looks pricuer than some brands, cheaper than others, and I think you can order in bulk and get free postage.
I now get rashes after sun exposure (and after other stimuli not fully identified yet). But before this obvious manifestation of a rash, I would often feel far more unwell after exposure to sunlight or fluorescent lights (joint pain, flu like etc).
Maybe try contacting Lupus UK for advice. I noticed from previous posts that you also suffered what sounds like urticarial type rashes on your legs (like stinging nettles) and it may well be worth your while getting your blood complement levels checked, especially C3 andC4 which can drop with lupus and lupus like diseases (I have anti-C1q antibody positive urticarial vasculitis syndrome).
Good luck 🍀
hi thank you footprints since I have been advised I have Fibro and long covid they don’t seem interested in anything related to lupus just blame everything on long covid and Fibro your information is appreciated greatly I will try your suggestion and see if it helps I have been inside working at desk near windows and after need bed feeling like flaring up.
🙏😀
Your welcome. Good luck and don't give up getting a full and proper diagnosis.
I was diagnosed with M.E. and then fibromyalgia before I was tested for my complement levels and anti C1q levels 33 years later. It was only then that I was diagnosed with vasculitis, having protested o thought it was autoimmune for over 28 years as symptoms gathered or intensified.
You tend to get labelled with M.E. and fibromyalgia in such a way that doctors stop looking for root causes. That's not to say that you aren't really ill with these conditions - we all know the reality of what we are experiencing - but efforts to understand the mechanisms behind these illnesses and to thoroughly rule out other possible diagnoses are few and far between once you are labelled.
Take care 🍀
THE SUN
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heartbroken and now flaring. :(
