Lymphocytosis and Fibromyalgia

Status
Not open for further replies.

LolaMerle

Active member
Joined
Jan 4, 2022
Messages
49
Reason
DX FIBRO
Diagnosis
12/2021
Country
US
State
WA
I am new here, and I am really thankful to have found this forum! I am 67 and have been dealing with pain in my feet, shoulders, neck, mostly left arm, and sometimes in my knees, for about 15 years. The doctors I have seen never addressed fibromyalgia, but ordered every test under the sun to find out that I am very healthy, YAY! Although about a year ago blood tests showed that I have “Monoclonal B Cell Lymphocytosis”, which means high lymphocyte numbers - mine are up to about 7 now. This just means that “something” could be going on, but we have to wait until the numbers get up to 10 and above before anybody worries about it. I have also gone to the emergency room about 6 times over the years because my left arm was really painful and I had an unexplained pain in my chest (breastbone). Again, everything was fine and I was perfectly healthy (Yay! again, but what about the pain?). I finally found a primary care doctor that, in the first 15 minutes of the appointment, asked if I knew about fibromyalgia. I said yes, I have read about it. She gave me the test and I squealed in pain at most of the points. I had been diagnosed with peripheral neuropathy and already was taking Cymbalta (60 mg/day) and this new doctor prescribed Lyrica also (I’m up to 150mg twice a day). That was about two weeks ago. I’m sure most people here understand how great it can be to just get a diagnosis after searching for years to find out why you are in pain all the time! So of course now it’s time to deal with the diagnosis. I had Covid in August and I believe that caused a flare up of fibromyalgia that has caused me so much pain and fatigue since then. I force myself to get on my exercise bike once a day now, just for ten minutes, until I feel stronger to go more. I’m hoping that will help with the fatigue, too. My feet still hurt and my left arm has been screaming at me for a month now, but I’m determined to stay the course. I ordered CBD oil from Sunsoil and am anxious to get started on that. Has anyone else experienced changes in their lymphocytes in blood tests? That part is a mystery and kind of hard to accept that “something” might be brewing but I have to wait to find out what it is. I wonder if it can be related to fibromyalgia?

Thank you for being here! I’ve already learned so much just be reading posts.
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,309
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Hi LolaMerle, and welcome to the forum. I can't answer your specific questions about lymphocytes, but I want to recommend that you read my post on managing FM just in case there might be something in there that would help you.

CBD may work for you, it does seem to help some people, and I hope that you will let us know how it goes for you. I have found, as have many others, that it doesn't do much without being combined with THC. Usually a 1:1 ratio is best. That is what I use, and find it pretty effective for some kinds of pain. I can regulate how much I take so as to get a pain reducing effect without getting high at all if I use Tinctures. The ones I use come from Tru Infusions, a brand I have used for years and trust. You have to be very careful where you get CBD online because many sites are scams. Usually going directly to a dispensary is safer. Tinctures are much easier to regulate in terms of exactly how much you are taking, not to mention of course being healthier than smoking or vaping anything. If the CBD alone doesn't work, I recommend you try combining it with a THC tincture, adding in only a tiny bit of the THC at first and building up.
 

LolaMerle

Active member
Joined
Jan 4, 2022
Messages
49
Reason
DX FIBRO
Diagnosis
12/2021
Country
US
State
WA
Thank you. I read your advice post and it is very helpful. As far as the CBD oil, I will add the THC as you suggested if needed. I do have to be careful because even a small amount of THC makes me squirrelly!
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,309
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Thank you. I read your advice post and it is very helpful. As far as the CBD oil, I will add the THC as you suggested if needed. I do have to be careful because even a small amount of THC makes me squirrelly!
That is the beauty of using the tinctures for the added THC. Or, you could use gummies. With either one, you can take just the tiniest amount and then take it from there. You don't want to take more than you really need if you don't want to get high. I have no objection to people getting high, but most of the time I don't want to. It took some work for me to get accustomed to how much to take and when but it has made a huge difference for me.
 

LolaMerle

Active member
Joined
Jan 4, 2022
Messages
49
Reason
DX FIBRO
Diagnosis
12/2021
Country
US
State
WA
I've been trying just CBD oil and CBD/THC that is 1:1 ratio, for about a week now. I do find that the CBD oil alone doesn't do much but if I am careful to take only .25ml of the CBD/THC, it "seems" to help pain. Still not sure. I am going to get THC to add to the larger bottle of CBD oil I got and see if just tinier amounts help.
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,309
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
I've been trying just CBD oil and CBD/THC that is 1:1 ratio, for about a week now. I do find that the CBD oil alone doesn't do much but if I am careful to take only .25ml of the CBD/THC, it "seems" to help pain. Still not sure. I am going to get THC to add to the larger bottle of CBD oil I got and see if just tinier amounts help.
I found that for certain kinds of pain, the 1:1 mixture in a tincture does the job nicely. for other kinds, I need to increase the THC. So I tend to buy a bottle of the CBD and another of the THC so that I can dose effectively for what is going on at the moment, although I still keep a bottle of the 1:1 at all times so it's easy to dose that way as well.

I think that is a more calculated way to go about it than to add more THC to the bottle, because what y ou really need to do is find out what ratio works best for you for this or that kind or level of pain. You can only find out by knowing exactly how much of one or the other you are taking, and if y ou are careful and figure that out y ou will save money because you will know exactly what you need at any given time and you won't ever use more than you need.
Best of luck with the experimentation.
 

LolaMerle

Active member
Joined
Jan 4, 2022
Messages
49
Reason
DX FIBRO
Diagnosis
12/2021
Country
US
State
WA
Yes, that makes sense. I am also finding that the 1:1 ratio works better. And boy howdy! I am finding out that a “flare-up” is exactly what I have been feeling intermittently over the years, but especially since I had a breakthrough case of Covid in August, which I am sure exacerbated the fibromyalgia in the first place. I was feeling almost like normal (or as close to it as I can get), up to 15 minutes a day on my exercise bike, and then I used some very light weights on my arms. My body has been telling me the last two days that this was a really bad mistake. I feel like I am back to square one! But since this is my first flare-up since discovering what it actually is, I do understand it better. Right now I can’t even imagine sitting on my exercise bike, let alone peddling, but I have to just tell myself there will be some down time and I’ll feel better (well, knock on wood).
 

djhsix

Active member
Joined
Dec 11, 2020
Messages
61
Reason
DX FIBRO
Diagnosis
12/2020
Country
US
State
WA
Has anyone else experienced changes in their lymphocytes in blood tests? That part is a mystery and kind of hard to accept that “something” might be brewing but I have to wait to find out what it is. I wonder if it can be related to fibromyalgia?
I've had the opposite experience with my lymphocytes. Mine went down to 0.3 five or size years ago. The docs ran every blood test they could think of but found nothing. In addition, my T-cells were dangerously low. The lymphocytes are back up to 0.6 - 0.7, which is just within normal range. Not sure if it was linked to FM, which I was diagnosed with in 12/2020.
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,309
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Yes, that makes sense. I am also finding that the 1:1 ratio works better. And boy howdy! I am finding out that a “flare-up” is exactly what I have been feeling intermittently over the years, but especially since I had a breakthrough case of Covid in August, which I am sure exacerbated the fibromyalgia in the first place. I was feeling almost like normal (or as close to it as I can get), up to 15 minutes a day on my exercise bike, and then I used some very light weights on my arms. My body has been telling me the last two days that this was a really bad mistake. I feel like I am back to square one! But since this is my first flare-up since discovering what it actually is, I do understand it better. Right now I can’t even imagine sitting on my exercise bike, let alone peddling, but I have to just tell myself there will be some down time and I’ll feel better (well, knock on wood).
The thing about exercise is this: don't stop doing it. Just scale back....WAY back...to a very small amount and build up slowly from there.
It's never a mistake to get some exercise. The thing that we all have to do is regulate for ourselves how much and what kind and when in order to make is possible. Maybe just walking would be better at first than the exercise bike.
Try doing the exercises with no weight at all, and only put the light weights in your hands once you can pretty reliably do the exercises without weights on most days without paying too much for it the next day.

It will feel as though you are doing nothing at all. That's good. Keep doing that and don't step up to more until some weeks have gone by that you can do it most days. Then add only a tiny amount more. Like, add a 1/2 pound weight or 2 minutes on the bike.

If you build very gradually you may still have setbacks, but you will eventually reach the point that you can do your 15 minutes or 1/2 hour at a certain level that you feel is about as much as you should try to do and then you stay there. It counts, even if it is not what you used to do.
 

LolaMerle

Active member
Joined
Jan 4, 2022
Messages
49
Reason
DX FIBRO
Diagnosis
12/2021
Country
US
State
WA
Thank you for the good advice, again. I need to start a list of advice like this to refer back to. At this point, I’m not sure if I should go back and find another thread to mention what is happening to me because it isn’t about Lymphocytosis. Can you tell me what the protocol would be for this?

For three days now I’ve felt like I have a flu, with body aches everywhere, extreme fatigue, feeling like a “hangover”. Of course it isn’t the flu, nor is it Omicron. It’s just so disheartening, and I feel like crying! We have been trying to empty our huge house that we’ve lived in for 20 years so we can get it on the market and get back to the simple RV living we did and loved for four years, and I can only sit here feeling so useless. Can something as simple as over-using weights while exercising have brought this on again? Yes, stress is high in this situation, but I was feeling so much better and starting to actually accomplish things, and now this. Do you force yourself to get out and go for even a short walk when you feel so miserable? I could deal with the pain popping up everywhere, but the fatigue and hangover-like feeling is the worst part. I’m getting a lot of sleep, too. I usually don’t feel so depressed, but right now I’m having a hard time of it. I’m sure this is nothing new to most people on this forum. Does this just become repetitive? You feel okay for a period of time, then you don’t and you don’t really know why except that it’s fibromyalgia? Sorry, I’m going to stop now because it’s not productive to just go on and on about feeling lousy!
 

LolaMerle

Active member
Joined
Jan 4, 2022
Messages
49
Reason
DX FIBRO
Diagnosis
12/2021
Country
US
State
WA
I've had the opposite experience with my lymphocytes. Mine went down to 0.3 five or size years ago. The docs ran every blood test they could think of but found nothing. In addition, my T-cells were dangerously low. The lymphocytes are back up to 0.6 - 0.7, which is just within normal range. Not sure if it was linked to FM, which I was diagnosed with in 12/2020.
The lymphocyte issue is a strange one. Are you having tests that monitor where they are at regularly? I know when they are really low it’s another whole list of possibilities, and the “possibilities” can be scary. Of course if they level out again it’s good (thank goodness yours did!), but you are left wondering why it happened in the first place. If mine had gone up so high around the time I got Covid, I’d have a hard time not relating the two, but the lymphocytes started going up the year before. I’ve just put that issue on the back burner for now because it’s hard enough to deal with fibromyalgia, but I am anxious to be tested again and find out where they are at. I hope yours stay in the range they are in - one less thing to wonder about!
 

sunkacola

Moderator
Forum Supporter
Joined
Dec 2, 2016
Messages
2,309
Reason
DX FIBRO
Diagnosis
00/0000
Country
US
Thank you for the good advice, again. I need to start a list of advice like this to refer back to. At this point, I’m not sure if I should go back and find another thread to mention what is happening to me because it isn’t about Lymphocytosis. Can you tell me what the protocol would be for this?

For three days now I’ve felt like I have a flu, with body aches everywhere, extreme fatigue, feeling like a “hangover”. Of course it isn’t the flu, nor is it Omicron. It’s just so disheartening, and I feel like crying! We have been trying to empty our huge house that we’ve lived in for 20 years so we can get it on the market and get back to the simple RV living we did and loved for four years, and I can only sit here feeling so useless. Can something as simple as over-using weights while exercising have brought this on again? Yes, stress is high in this situation, but I was feeling so much better and starting to actually accomplish things, and now this. Do you force yourself to get out and go for even a short walk when you feel so miserable? I could deal with the pain popping up everywhere, but the fatigue and hangover-like feeling is the worst part. I’m getting a lot of sleep, too. I usually don’t feel so depressed, but right now I’m having a hard time of it. I’m sure this is nothing new to most people on this forum. Does this just become repetitive? You feel okay for a period of time, then you don’t and you don’t really know why except that it’s fibromyalgia? Sorry, I’m going to stop now because it’s not productive to just go on and on about feeling lousy!
You are under a lot of stress right now just because you are downsizing and moving. Even if this is a completely happy move, it is very stressful. Also, if you are feeling anxious or depressed that will make your pain worse.

Yes, over-using weights can end up making you feel terrible the next day - or three days. That is why you have to build up very slowly to find out what you are able to do. In the process you will learn to listen acutely to your body so you know if it is telling you to stop right now. And you will learn to heed those warnings, which can sometimes be very tiny and you have to be paying attention.

To some degree it becomes repetitive. You will have good days, weeks...and bad days and weeks. You learn to go with the flow. what I know now is that I actually caused myself more mental and physical pain in the beginning because I fought against it by getting frustrated, and angry, and saying to myself that I "shouldn't" be feeling this bad after "only" doing XYZ, and so on.

Once I learned to just let it be what it is each day, without attaching a bunch of emotion to it, things got so much better it was as if I had taken a miracle drug or something. I honestly think that this has been a huge key for me in managing fibromyalgia. Accept what is happening in this moment. Radically accept it. Accept again.
So you had plans? Things change. Accept that, make it an OK day anyway.
So you failed at the exercise you wanted to do today? Oh well, Accept it! Do something else, or just try again tomorrow.

True courage is not being strong all the time or always coming out of the chute roaring.
Sometimes it is simply saying, I will try again tomorrow.


I used to be super strong, worked out with weights every day, spent days hiking and then went dancing all night, and so on. Can't do that any more, so my attitude is: Boy am I glad I ever could do that, and I am glad I did so much of it when I could.

Now I can still do things like that, just not quite as much. I can still hike, can still dance (just not all night). I kept trying to work out with weights, to find that "sweet spot", where it would not be too much, but the "sweet spot" kept moving. I finally realized that I cannot work out with weights any more except the lightest ones, but this is not due to FM, but w to carpal tunnel in both wrists and some other problems in my hands.

This, and....yes forcing myself when needed....doing some form of movement every day. The days when I do not manage this it only makes me feel worse.

The thing is to experiment as I say in my advice post on how to manage fibromyalgia. You have to find your very own sweet spots and learn to listen to your body and do what is says. Fibromyalgia can ruin your life, but it won't if you don't let it.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,948
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Brilliant advice again, @sunkacola. Trying to think up a new image for this effect, I'd say it's like steering a boat, sometimes it feels like an oil tanker. ⛵🚢⛴️ Even a bit too much movements over the limit (direction/speed) will take quite a while to have its effect, and it may then wheel over way too far. Either we have to learn that off by heart despite our muddy brains and the joy of feeling normal for a moment, or we have to learn to read the signs: My wife can read my face, so we are having regular sessions in front of the mirror now. :LOL: :cool: Blue/white lips and blue/white/green/dark around the eyes and generally face, despite a bit of brown faking it. The more, the worse I'm probably off. But it's hard for me, I'm not used at all to glancing at myself more than 5 seconds, more by mistake. When shaving - which has gotten less due to mask and not getting out much - I only look at my chin.
 

JayCS

Legendary member
Forum Supporter
Joined
Sep 5, 2020
Messages
1,948
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
I’m not sure if I should go back and find another thread to mention what is happening to me because it isn’t about Lymphocytosis. Can you tell me what the protocol would be for this?
As you started this thread, you wouldn't in the full sense be 'hijacking' it by taking it on to a different topic.
The main reason to start a thread with a more suitable title is that people can find it better,
which might give you more readers (members as well as guests) and especially responses, so better for yourself.
Another is that it can get pretty confusing to read - esp. because a lot of people don't quote what or who they are referring to.
That said, again: "worrying not allowed"! ;)
 

LolaMerle

Active member
Joined
Jan 4, 2022
Messages
49
Reason
DX FIBRO
Diagnosis
12/2021
Country
US
State
WA
True courage is not being strong all the time or always coming out of the chute roaring.
Sometimes it is simply saying, I will try again tomorrow.
This, I feel, is really what I need to learn myself, and live it. I’ve always told my children and grandchildren that it isn’t how many times you fall, it’s how many times you get up that counts. I never considered that I would need to apply that to my health, but I can see how it applies now. Thank you for the reminder. Thank the gods that I have an absolutely wonderful husband who, for 46 years, has been so supportive and understanding. I remind myself constantly how truly blessed I am.

On this fibromyalgia journey, it’s a new thing to start feeling sick and not wonder if you are getting cancer or if your liver is failing, or if you’re getting the flu or Covid, or, or, or - something! If I can get rid of that anxiety and know that it will subside, to some degree or another, and I just need to accept what is happening and do my best to ride it out, while learning to enjoy life despite it. Big words and big plans, but just hearing it said can be a beginning. So thanks again for your support and words of wisdom!
 
Status
Not open for further replies.
Top