View Full Version : Suspect this has turned into CFS


tudorose
02-18-13, 08:19 PM
So it's been 19 months now and I still can't do the things I used to go pre July 2011.

I know that the symptoms of RRV and CFS are the same but I'm not sure how long this is supposed to go on for.

I'm going to the doc today and see if they can do some blood tests and hopefully rule it out but I have a feeling that it will not rule it out but confirm it.

I'm tired of feeling like cr@p. Fed up with aching all the time and having a payback every time I exert myself.

I didn't realise how much of an impact this was having on our lives until DH got asked to travel for work. He said no coz I need him too much just to be able to function and hold down a full time job. He rides his bike to the car in the arvo and drives me home. He carries everything when we go out coz it's hurts for me to do it. He opens doors and things when I can't.

So even though I might appear like I'm all good our lives are nothing like they used to be. We work around the issues but that has become our life to the point that we didn't even realise. If my right hand is sore I use my left hand etc.. If my legs are cramping I get people to help me so I don't have to walk so much.

I try not to say anything or complain unless it's really bad but that doesn't mean it's all good.

When i had a load of tests done at the start it came back with very low vit D levels but every time I try and take vit D supplements it makes me feel so nauseous. I'm not sure if it's the vit D making me feel like cr@p so I can't go to work today or whether it's just the RRV. Either way I've had enough of it. I just want some relief and I want my quality of life back again.

This thing pretty much stops the ADHD meds working. Even though I'm on 25mg dex a day I'll be sitting at my computer in the middle of something and then halfway to the destination (on the system) I forget what I'm supposed to be doing. I can't hold thoughts in my head consistently. The only thing keeping me going is caffeine which used to cause anxiety but now seems to be a necessity.

The weather has been difficult lately. It's been so hot which means that everywhere you go inside it is freezing and I'm spending a lot of my time absolutely freezing inside or totally melting outside. I feel like it's taking it's toll. Also they keep doing pest control in the building almost on a weekly basis and every time they do that it makes me feel even worse.

I'm just worried coz I wonder what life there is for me going into the future. It's gotta be better than struggling through every day and then crashing on the couch at night.

Whilst working is hard i need to work coz I need the positive stimulation. If I didn't work I'd get really stressed coz my imagination would run away with me and that's not constructive. Part time isn't really an option coz there is too much to be done and changing job isn't something I want because I have the most supportive workplace ever.

I guess I'm just feeling sorry for myself. I hope the doc can give me some answers. I can't even have the blood tests til DH can take me in case I have a reaction and can't get home by myself so it's going to be a long wait. :(

tudorose
02-19-13, 06:58 AM
Okay so I went to the doc and she said that RRV and CFS are the same thing in terms of symptoms and the treatment is exactly the same.

So on the plus side at least I don't get another label.

And DH is going to take me for the blood tests tomorrow so it should be less of a wait to find out if it's anything else.

Fuzzy12
02-19-13, 07:32 AM
((((((((((TUDOR))))))))))))

glad to hear that you haven't been labelled with yet another scary diagnosis that might throw up new symptoms or problems.

I know it's still a big struggle though and it must be disturbing thinking of the future. I can relate to needing to work inspite of my problems and inefficiency at work. I'd go crazy if I stayed at home. With no external motivation, I think, I'd just sit on the sofa all day long, binge eat like crazy and watch rubbish TV. I too need the stimulation and the social interactions I get at work.

I hope things get a bit easier for you soon. :grouphug:

dasikins
02-19-13, 01:28 PM
So it's been 19 months now and I still can't do the things I used to go pre July 2011.

I know that the symptoms of RRV and CFS are the same but I'm not sure how long this is supposed to go on for.

I'm going to the doc today and see if they can do some blood tests and hopefully rule it out but I have a feeling that it will not rule it out but confirm it.

I'm tired of feeling like cr@p. Fed up with aching all the time and having a payback every time I exert myself.

I guess I'm just feeling sorry for myself. I hope the doc can give me some answers. I can't even have the blood tests til DH can take me in case I have a reaction and can't get home by myself so it's going to be a long wait. :(

Ok first off, your not feeling sorry for yourself. UM, look how many threads I have started. I should win the 'feel sorry for myself award' lol.

As you might remember from my posts, I also struggle with the severe fatigue . It's debilitating and I really hope you find out what is causing your symptoms. There is definitely a connection between pain and CFS. Have you seen a Rheumatologist?

I know it's hard to diagnosis, but that could be causing it. I have gone through and continue to go through multiple specialist and tests. I have not been identified with anything yet, but if you need any more info I am your FATIGUE girl.

Please let us know how things are going and what you find out! If you are Vitamin D deficient can you try eating more foods high in vitamin D to see if it helps? That way it may help with your tummy? I know it takes a good couple of weeks to see results, but Vitamin D seems to be linked to a lot of things. There is a lot of new research being displayed in the media now regarding Vitamin D.

Again, keep us posted! I will be praying the tired gods for you!

dasikins
02-19-13, 01:31 PM
Okay so I went to the doc and she said that RRV and CFS are the same thing in terms of symptoms and the treatment is exactly the same.

So on the plus side at least I don't get another label.

And DH is going to take me for the blood tests tomorrow so it should be less of a wait to find out if it's anything else.

What treatments are they doing? As of right now there are no treatments for CFS other than decreasing symptoms such as Nuvigil, stims, ect.

I haven't had time to read through this yet. Wait. No. I have had time, but get side tracked, but read through this. There has finally been some promising researching regarding CFS. For so long doctors didn't even believe it was real and insurance companies would not pay for medication and the government would not recognize it for disability.

http://www.autoimmunityresearch.org

MellyFishButt
02-19-13, 01:33 PM
Those gummy vit d are really good actually.

salleh
02-19-13, 03:01 PM
Ah Tudor.....you're not complaining ...you're just saying it like it is ......and it's just not good ......

...I have been there myself ....feeling like I was just whining all the time, but I really wasn;t, just telling the truth ......

sometimes the truth is very painful .....

you will always have people here who care about you ...and it seems some who might actually have a useful idea or two for you ! .....

whereas all I can do is cross my fingers and send good thoughts to you ....I do hope you find your answers, and that with those answers come possible treatments .....

I know you're a person who is athletic, and I know this has to be extra special hard for you ......

tudorose
02-20-13, 06:18 PM
It's debilitating and I really hope you find out what is causing your symptoms. There is definitely a connection between pain and CFS. Have you seen a Rheumatologist?

I know it's hard to diagnosis, but that could be causing it. I have gone through and continue to go through multiple specialist and tests. I have not been identified with anything yet, but if you need any more info I am your FATIGUE girl.

Please let us know how things are going and what you find out! If you are Vitamin D deficient can you try eating more foods high in vitamin D to see if it helps? That way it may help with your tummy? I know it takes a good couple of weeks to see results, but Vitamin D seems to be linked to a lot of things. There is a lot of new research being displayed in the media now regarding Vitamin D.

Again, keep us posted! I will be praying the tired gods for you!

I can't take the vitamin D supplements. I suspect that trying again has caused this latest crash. The doc said that some people just can't tolerate them and I guess I'm one of them. Instead I've been prescribed 30 mins of sun every day between the hours of 7 and 8am and 5 and 6pm. I'm lucky to be living in a climate that has sun all year round. It's just after 6 and the sun is already coming up. We're getting about 12 hours a day sun at the moment.

They know what it is. It is RRV. It's a mozzie borne virus called epidemic poly-arthritis. All the symptoms are the same as CFS with the exception of numb, tingling and swollen hands which you get with RRV. She's also testing me for celiac and rhumatoid and some other things I can't pronounce.

I did the blood test yesterday and went to work after. Big mistake. I was feeling so cr@p - like my number was up. Physical distress would prob be the best way to describe it. So I'm off work today and prob tomorrow too. I haven't seen them all look so worried in a long time. The last 3 days is the worst I've felt since in all started. I really hope today is not like the last 3 days.

tudorose
02-20-13, 06:21 PM
((((((((((TUDOR))))))))))))

glad to hear that you haven't been labelled with yet another scary diagnosis that might throw up new symptoms or problems.

I know it's still a big struggle though and it must be disturbing thinking of the future. I can relate to needing to work inspite of my problems and inefficiency at work. I'd go crazy if I stayed at home. With no external motivation, I think, I'd just sit on the sofa all day long, binge eat like crazy and watch rubbish TV. I too need the stimulation and the social interactions I get at work.

I hope things get a bit easier for you soon. :grouphug:

THanks Fuzzy!

I'm glad that someone can relate. I really want to go to work but I can't. I'm off today and maybe tomorrow and that's gonna drive me nuts but I can't go in when it's too hard to even hold a verbal conversation. :(

tudorose
02-20-13, 06:23 PM
Ah Tudor.....you're not complaining ...you're just saying it like it is ......and it's just not good ......

...I have been there myself ....feeling like I was just whining all the time, but I really wasn;t, just telling the truth ......

sometimes the truth is very painful .....

you will always have people here who care about you ...and it seems some who might actually have a useful idea or two for you ! .....

whereas all I can do is cross my fingers and send good thoughts to you ....I do hope you find your answers, and that with those answers come possible treatments .....

I know you're a person who is athletic, and I know this has to be extra special hard for you ......

(((((((Thanks Salleh)))))))

dasikins
02-21-13, 12:15 AM
Feel better! I will have to research what RRV is. I know you mentioned it pertaining to Australia.

Get lots o' rest and make something yummy for your tummy!

SquarePeg
02-21-13, 03:34 AM
Tudorose, sorry to hear your still not recovering. PM if you want to know anything as my CFS is pretty much under control after so many years.

One thing I always found helpful is Berocas which I know they have in Australia.

Another strange thing that helps but have seen nothing on the net about it at all is that I suffered constant nausea, almost 24 hours per day and I always seem to feel that I didnīt have enough oxygen. The times I have felt tip top mentally and physically is when I have had oxygen in hospital (either because of a procedure I was having or visting someone and had some of theirs).
Maybe I need to practise my breathing or something.

tudorose
02-21-13, 05:22 AM
Tudorose, sorry to hear your still not recovering. PM if you want to know anything as my CFS is pretty much under control after so many years.

One thing I always found helpful is Berocas which I know they have in Australia.

Another strange thing that helps but have seen nothing on the net about it at all is that I suffered constant nausea, almost 24 hours per day and I always seem to feel that I didnīt have enough oxygen. The times I have felt tip top mentally and physically is when I have had oxygen in hospital (either because of a procedure I was having or visting someone and had some of theirs).
Maybe I need to practise my breathing or something.

I find the nausea is the biggest indicator that i've pushed things too far. I also find that painkillers assist this. I don't always register pain in the normal way so I think it's related to pain. I feel a bit better after spending most of the day in bed and not takimg any meds. Sometimes I wonder if meds make it worse.

Oxygen deprivation...... EPO? Know any cyclists? Hey you are in Spain. My physio is Spanish. He reckons they have the best drugs....the sportsmen that is......

stef
02-21-13, 05:37 AM
I havent' replied yet, don't know what to say....so sorry you have to go through all of this!

SquarePeg
02-21-13, 05:51 AM
Iīve met anyone that suffered with the nausea like me. Every time I went to docs it was "oh you sound pregnant". Can you try oxygen? I know in Japan they have those oxygen (somethings) where you can go in during your lunchtime and get a fix.

I was so desperate once I went to an alternative therapist and took pills made from animal adrenal glands or something (they felt good as well).

Cycling is huge here, doesnīt suprise me that they have some good drugs!

silivrentoliel
02-21-13, 12:15 PM
I don't really know much about CFS, but I do know it sucks :( I'm sorry, but is it at least treatable? At least the RRV has gone! That's a good thing, right?

tudorose
02-21-13, 05:40 PM
It's not cfs. It's stil rrv. And coz the symptoms are the same the treatment is the same. If I had known all this a couple of months ago I would never have attempted to start riding to work again. I find I can manage doing stuff if I lie down after like on holidays but I can't ride in to work and then do a full day. At the moment i'm ok coz I stayed in bed almost all day. I'd do something and the go lie down for 2 to 3 times as long or longer than it took me to do the activity -like making dinner.

tudorose
02-21-13, 06:24 PM
Iīve met anyone that suffered with the nausea like me. Every time I went to docs it was "oh you sound pregnant". Can you try oxygen? I know in Japan they have those oxygen (somethings) where you can go in during your lunchtime and get a fix.

I was so desperate once I went to an alternative therapist and took pills made from animal adrenal glands or something (they felt good as well).

Cycling is huge here, doesnīt suprise me that they have some good drugs!

I have heard of one cyclist who got banned for putting ozone into his blood to increase the oxygen content. A lot of the doping in cycling is to get more oxygen. We prob need increase our VO2 max levels but I don't know how that can be done safely with cfs without causing a crash.

dasikins
02-23-13, 01:06 PM
It's not cfs. It's stil rrv. And coz the symptoms are the same the treatment is the same. If I had known all this a couple of months ago I would never have attempted to start riding to work again. I find I can manage doing stuff if I lie down after like on holidays but I can't ride in to work and then do a full day. At the moment i'm ok coz I stayed in bed almost all day. I'd do something and the go lie down for 2 to 3 times as long or longer than it took me to do the activity -like making dinner.

How are you feeling? Has the treatment helped? You may of mentioned what it was, but I can't remember.

SquarePeg
02-23-13, 01:24 PM
I have heard of one cyclist who got banned for putting ozone into his blood to increase the oxygen content. A lot of the doping in cycling is to get more oxygen. We prob need increase our VO2 max levels but I don't know how that can be done safely with cfs without causing a crash.
I might look it up on the net. I think even simple breathing exercises can help plus learning how to breathe properly. Many people take very shallow breaths and hold it too long, especially when anxious. I think your stomach is supposed to inflate rather than your chest.

tudorose
02-24-13, 06:38 AM
I might look it up on the net. I think even simple breathing exercises can help plus learning how to breathe properly. Many people take very shallow breaths and hold it too long, especially when anxious. I think your stomach is supposed to inflate rather than your chest.

That's correct.

VO2 Max though is the maximum amount of oxygen you can store in your muscles. In cycling it's achieved through interval training but that's totally beyond me right now.

In the scientific section I'm sure that Peripheral and SB were saying something about oxygen, but it was too hard to understand without any meds.

tudorose
02-24-13, 06:56 AM
How are you feeling? Has the treatment helped? You may of mentioned what it was, but I can't remember.

I was on the stuff from the naturopath but the company who makes it has decided not to make it anymore. Since then, especially as I was just starting to ramp up my activity, my life as gone to ****. I've written to them but I don't expect to get a response. At the moment I'm trying a couple of things that hopefully together might achieve the same result. It really p*sses me off coz it's completely un-necessary.

This is the worst relapse I've had since the start. The other stuff I'm on does help but this particular one was one I thought I'd be on for a very long time (as in longer than my ADHD meds).

So right now I'm trying to eat as well as I can, rest as much as I can, drink heaps of water and take the stuff the naturopath has given me and just wait and see what the doc says about my blood tests when I go back on Thursday. I'm also using my skins recovery wear to sleep at night and I have some compression gloves that are waiting for me at the post office but the stupid post office has suddenly decided to close on Saturdays so now I have to wait til I don't know when to get there on time to pick them up.

I wish there was some quick fix for this to at least return to a functioning state. I'm really worried about getting to work tomorrow - and that's just getting there. I don't know if I can drive to the train station. I don't know if I can catch my usual train coz they only give us half a train so I'll have to stand the whole way. I could catch the bus to the other train line but I don't know how nauseating the bus will be. Haven't got past all this to work out how I will actually make it through the day.

I'm so scared and I can't see my way clear. I'm worried about what will happen to me work wise.

I just have to be right for tomorrow and now I have less than 12 hours.

I want to be spending tomorrow at work - not on the forum.

SquarePeg
02-24-13, 07:09 AM
I can remember getting ready for work and getting a bus to the train station and then being totally exhausted and thinking WTF why have I been given the body of a 90 year old! Donīt be proud, as for a seat on the train. Remember there is no quick fix, I know you are impatient but you need to take it slowly.

dasikins
02-24-13, 11:56 AM
Tudorose, can you take some sort of leave of absence? Is there disability that can help for a little bit? Maybe your company will be accommodating and allow you to work from home sometimes? Or part time? I don't know what you do, but maybe you can talk to them.

I am so very sorry to hear what you are going through. As you have seen from my plethora of threads, I struggle with the same thing. Well, NOT the same thing, but the debilitating fatigue. That's why I am not working right now. I failed at it. Twice. I too am anxious and fearful of failing again.

Until you hear from the doc there is nothing they can give you for some energy? I am just taking a stab here, but Nuvigil and other meds they use for Narcolepsy are very helpful on that aspect. Even just taking it until you get some answers or long term help.

Keep eating well and drinking lots of fluids. Try and go slow and easy. Will be thinking positive thoughts for you.

stef
02-24-13, 12:33 PM
would your company finance transportation (like a taxi)?
kind of a long shot,i heard that a boss did this,for one of my colleagues before maternity leave...

tudorose
02-24-13, 05:38 PM
would your company finance transportation (like a taxi)?
kind of a long shot,i heard that a boss did this,for one of my colleagues before maternity leave...

The budgets pretty tight but this is a good idea. Not sure I could bring myself to ask though but it is a good idea.

tudorose
02-24-13, 05:42 PM
Tudorose, can you take some sort of leave of absence? Is there disability that can help for a little bit? Maybe your company will be accommodating and allow you to work from home sometimes? Or part time? I don't know what you do, but maybe you can talk to them.

Until you hear from the doc there is nothing they can give you for some energy? I am just taking a stab here, but Nuvigil and other meds they use for Narcolepsy are very helpful on that aspect. Even just taking it until you get some answers or long term help.

Keep eating well and drinking lots of fluids. Try and go slow and easy. Will be thinking positive thoughts for you.

Thing is my job is not officially mine. We're trying to get it made permanent which is why I need to be there as much as possible. They are understanding though but this isn't the kind of job I can do from home.

I'm back on my adhd meds today. Hopefully that will help me.

Fuzzy12
02-24-13, 07:27 PM
fingers crossed tomorrow Will go as smoothly as possible. Can you reserve a seat on the train? Or use the disability seats? I'm not sure what you do but is working part time or working from home an option? My friend was off work for quite a while due to depression and when she went back she had a phased return where gradually her Wesl hours and worload was increased. Hope tomorrow Will be ok.

tudorose
02-25-13, 08:15 AM
I really struggled though today. And they kept trying to send me home but I figured it was better to just do what I had to do today rather than do half a day only to have to go through the same again tomorrow.

It was sooo hard just getting in. And DH was sending me messages all day in full on 'husband fix-it' mode so it means he's worried. To be honest I'm worried too but I have to put it out of my head so I don't get upset and just focus on what I need to do to get better. I need be logical and turn off the emotions.

When I got home I couldn't even stand to take a shower. Lucky we have a bath. DH bought me some more epson salts too.

I'm finding this hard. I really want to go to work but I just can't. I'm not the kind of person who enjoys spending a lot of time alone at home. A day here and there maybe but when it's looking like 5 out of 10 days.... And I don't even have any re-runs of Star Trek Next Gen to watch.

Yes still feeling sorry for myself.

kattsqueen
03-07-13, 09:14 PM
Hi all I haven't replied to anyone since I received my life changing revelation several years ago right here at the add forums.. while looking for information on natural treatments for add I came across a link to older posts that included DR. Michael Segal Md. Phd. and the research he was doing that involves ion channelopathies and a rare form of attention deficit disorder considered to be a type of sensory overload issue, this includes a group of people experiencing muscle pain (fibromyalgia like symptoms) chronic fatigue, problems with resistance to lidocaine and so much more... It fit all of my symptoms and guess what.. two days on a low sodium, high potassium diet, with no refined carbs and I woke up on the morning of the second day feeling absolutely no pain, sensory issues greatly resolved and blood pressure well within the normal range.. during these two days I also supplemented 2000 mgs of potassium a day,, do a search for dr. Michael Segal md. phd. and his posts should come up.. Id like to suggest you read them and give what you read some thought.. this has improved my life so much.. katts