• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

A treatment that helps me tremendously

sunshine44

Que sera sera
Messages
1,189
I’ve often wondered about the MS piece for me. I was diagnosed with PoTS after testing positive a while back. I was also diagnosed after testing with dysautonomia other than PoTS. I was diagnosed with ME because I fit all required points, but there is no absolute tool for diagnosing it. That is the same with MS. There is no absolute diagnostic tool for MS. Rather, it is a process of ruling out everything else combined with a detailed medical history.

That being said, I do have many MS symptoms:

Fatigue - chronic and severe
Weakness - chronic and at times severe
Endocrine issues
Tidal difficulty swallowing
Emotional swings - can be severe
Cognitive complications
Chronic pain
Itching
Vertigo and severe neurological vision issues
Chronic muscle spasms and cramps
Mild numbness
Mild tingling sensations in fingers

My father’s sister (my aunt) has MS.
Also, medical science has linked Scandinavian genetics to being more predisposed to developing MS than many other genetics. And I have strong western Scandinavian and northern Germanic genetics.

As to the symptoms, many of course overlap with dysautonomia conditions other than MS.

Anyway, it is something my medical team has not yet ruled out.

Similar thoughts here as well for myself.
 

Johannes

Senior Member
Messages
332
I am starting to have headaches if I do too much. Driving one hour back and another forth to a big city plus 1 to 2 hours shopping takes my strenght away for approximately for two days. I can then barely walk twice a day with our dog, 1,7km a day but have troubles at cooking and cleaning. I have been able to do some light work at home. Also, I have problems with my chemical sensitivity. I have to limit my diet. But if I rest and don't do too much, I feel OK.

it seems, that I bough one month extra wellness by being six weeks in Spain. Actually maybe two but I have so much to do, that I feel like only one. Because I am having fatigue. I estimate that when I have previously been bed bound 22/7 by the end of February, this time I would be bed bound similarly, but at the end of March or middle of April. Although, sunshine around the middle of February in Spain will help me get better in a few days and in a month back to my Summer self. Because of my deppresion that is about to emerge, I am afraid to travel to Spain. I might be in a pretty bad shape when I get there, because travelling is so demanding.

Our flight is from Arlanda, Sweden to Alicante, Spain on the 3rd of February. To get to Sweden, we have to take a passenger ferry from Finland to Sweden on the 2nd of February. There will be a general strike somewhere between the end of January and the beginning of February. That's what the union activists are threatening with. So it may be that we may have to travel to Sweden for one week, before our fligh. That would make the trip even more demanding. One night at a hotel would cost us appr. 50 euros. One week would be 350 euros plus food and taxi.

The other option would be that we would fly to Sweden a week later but loose some 170 euros because they don't give money back from the dogs flight ticket. Then there would be a problem to find two seats from the same plane with our dog. And a cabin for pets from the ferry. There can be only two dogs in the same plane, and at this time of the year, you normally have to buy a ticket for a dog a couple of months before the flight.

Let's hope that if there wouldn't be any strike, that would affect our travel plans.
 
Last edited:

ilivewithcfs

Senior Member
Messages
127
I want to share my experience with getting sunlight. Exposure to sunlight for more than 5 to 10 minutes always gives me a lengthy flare up of my symptoms. So here's what I did. I bought a lightbox (the one that people with seasonal affective disorder use) and it works well. I use it every morning for 10 to 20 minutes, it certainly cheers me up a little without a flare up. I also supplement vitamin D regularly.
 

Johannes

Senior Member
Messages
332
I want to share my experience with getting sunlight. Exposure to sunlight for more than 5 to 10 minutes always gives me a lengthy flare up of my symptoms. So here's what I did. I bought a lightbox (the one that people with seasonal affective disorder use) and it works well. I use it every morning for 10 to 20 minutes, it certainly cheers me up a little without a flare up. I also supplement vitamin D regularly.
Have you ever tried to start with lower dosage of sunshine raising the dosage gradually to higher. Fot example a couple of minutes a day for a week, then maybe 4 to 5 minutes a day for a week, then maybe 7 minutes a week, etc.

I felt nausiated when I started my sunbathing after a long dark winter but my symptoms didn't flare up. I only had nausea. By gradually raising the dosage, I didn't feel nausiated. The similar effect I had with red and near-infrared light.
 
Last edited:

ilivewithcfs

Senior Member
Messages
127
Have you ever tried to start with lower dosage of sunshine raising the dosage gradually to higher. Fot example a couple of minutes a day for a week, then maybe 4 to 5 minutes a day for a week, then maube 7 minutes a week, etc.
That's actually a good idea. I think I'll try that in spring. Right now it's freezing cold and dark outside.
I did this with infrared light also. I slowly increased the duration of the procedure. I successfully avoided the flare up, however infrared light did nothing to improve my symptoms.
 

Johannes

Senior Member
Messages
332
I took my fifth covid shoot with influenza shoot last monday. Had pretty nasty stomach and bowel reaction, which I always get from these injections. I lost my strengh for four days too. Now I am fine. We both took these shoots with my wife because if she gets covid, it might be serious...life threathening, according to her doctor. I quess it is a good idea to get these injections because we travel to Spain. My brothers almost always get covid when they travel to their holidays abroad.

I just noticed that I can't do more than small and light home work (+ walks with the dog) without getting headache and small brain fog. Because of that, I checked the UV index curve of the area I lived in Spain. It seems that there was no UVI higher than 3 (for two to three hours), after the first of November except in four or five days. It means, that just when I started to feel better in Spain, after being four weeks in sunshine, the much needed UVI 3 vanished. No wonder I don't feel as good as I expected. From previous experience, I know that one extra month sunshine with UVI 3 gives me additional one month without symptoms. So here we are: my symptoms are about to start getting worse. However, I feel happy, because without Spain, I would have had this happening to me already in the middle of November.

Next Autumn I will try to travel to the same area of Spain already on the 5th of November, getting 10 more days worth of UVI 3, returning after 7 weeks around the 23th of November, staying home for 12 weeks, and then flying back. But it may be, depending of my wife's health that we might end up staying there for the whole winter. You see, the flight tickets to home and back with the dog are worth the same price than the rent of the department in Spain for 12 weeks. If I have too much symptoms when we I fly back to Spain on the 3rd of February 2024, I may have to concider staying there for the whole winter, next time. Travelling is always pretty hard for me, if I am not in my good summer condition. Flying there on October and coming back on November is OK.
 
Last edited:

Johannes

Senior Member
Messages
332
That's actually a good idea. I think I'll try that in spring. Right now it's freezing cold and dark outside.
I did this with infrared light also. I slowly increased the duration of the procedure. I successfully avoided the flare up, however infrared light did nothing to improve my symptoms.
Maybe infrared would do the same job for you than red and near-infrared did for me, after all, near-infrared has the wavelenght pretty close to that of infrared. You could start using infrared daily for example six weeks before sunbathing. That was enough time for me to get rid of the nausea so that I could stay in sunshine 2,5 hours without nausea.
 

ilivewithcfs

Senior Member
Messages
127
Maybe infrared would do the same job for you than red and near-infrared did for me, after all, near-infrared has the wavelenght pretty close to that of infrared. You could start using infrared daily for example six weeks before sunbathing. That was enough time for me to get rid of the nausea so that I could stay in sunshine 2,5 hours without nausea.
Yeah, I'm actually using infrared daily anyway,it helps my skin. So this spring I'm definitely going to give sun exposure another shot. Thanks
 

Johannes

Senior Member
Messages
332
The first week was terrible. Crying all the time. Terrible mental stress about arranging funeral and distribution of an heritance. Stress made my CFS symptoms worse. Now that my and my wife's friend moved to a room of this house with her daughter and a cat, I feel more content. She is supportive and helpfull. Listens to me and hugs me if I geel sad. She is gonna rent a room for the rest of the year. She'll be here while I will be in Spain, taking care of my house. Now it is really easier. Funeral is on the 28th of January and I fly to Spain on the 3rd of February.
 

Long Haul Mono

Senior Member
Messages
122
The first week was terrible. Crying all the time. Terrible mental stress about arranging funeral and distribution of an heritance. Stress made my CFS symptoms worse. Now that my and my wife's friend moved to a room of this house with her daughter and a cat, I feel more content. She is supportive and helpfull. Listens to me and hugs me if I geel sad. She is gonna rent a room for the rest of the year. She'll be here while I will be in Spain, taking care of my house. Now it is really easier. Funeral is on the 28th of January and I fly to Spain on the 3rd of February.
It's great to hear you have the support you need at this time. The members of this forum are with you.
I hope Spain treats you well, or at the very least gives you a chance to process all that has happened.
 

Johannes

Senior Member
Messages
332
I miss my wife so much. I have friends helping me and I can talk with them but nothing brings her back. I have so big hole in my heart, and no comforting can heal that. The lady who moved to my house is the best. She understands me and knows just what to say to me. But still, this sorrow is so bad.

Now all the funeral arrangement have been made. I have less stress, which makes my symptoms easier to handle, I am starting to feel a bit better.
 

Johannes

Senior Member
Messages
332
After my Mom died, I joined a couple FB grief groups. It does help some. I think there are ones for spouses too in case you wanted to look for one.
Thanks Judee! I am not ready for that yet. I have my second crisis therapy session on the 12th of February. I will be in Spain then but it will be done via Teams.


There is just no pain like the pain that comes from losing a most cherished loved one.

Say no more... I lost my mom around 2007, I can talk with my father about that.
 

Johannes

Senior Member
Messages
332
I have been happy about my friend and her daughter moving in to my house. I like them. They like me. She can relate to my sickness and understands CFS. They are helping me anyway they can, which is a huge huge help. But it makes me sad, what I have just discovered, that she seems to have CFS symptoms as well. They are propably EDS related. The doctors are still studying her.

Just when I found someone I can be happy about, but then I have to worry about her too. I thought I had done my worrying and anxiety, concerning my wife's wellbeing. When she died, my anxiety was gone. Now I have to worry about my friend. This is a bit too much for me right now. But she takes it easy. She can still work. It is just finding out what kind of work is good for her. The medical personnel are taking good care of her.

I am looking forward to my trip to Spain. I hope I am not too lonely there. I have a couple of new friends there buying me grocery and propably walking with my dog. I stopped drinking when my wife died. My drinking was anxiety related. I don't feel like drinking at all. If I drink in the future, I only drink every now and then. Not daily, not even weekly. But I might be without alcohol for a long time. I am quite close to what could be described as a father figure for her daughter. It is not appropriate to drink alcohol when spending time with them. Her mother doesn't drink either.

I might see my friend and her daughter in Spain, just before I fly back on the 22nd of April. Maybe for a week or two, I hope. We'll see.
 
Last edited:
Back