Occasional muscle tremors?

Hi StarrA,

I had a lot of the symptoms you do (and currently still have weakness too alongside what I already named).

Weakness, muscle jolts sometimes, anxiety, shakiness, shortness of breathe, no appetite, muscle twitching, dryness everywhere (nose included), brain fog, severe knee pain, depression, sleep issues due to increased anxiety, extreme fatigue (so bad I could barely walk), nerve pain from my low back all the way down to my toes, jelly legs, stiff joints (especially legs), throbbing muscles, popping joints (more than usual), weakness, shakiness, neck pain that turned into headaches, joint pain, nausea.

I still have brain fog and nerve pain in legs alongside the shakiness, weakness, fatigue, and joint pain and stiffness.

I hope everything turns around for you soon and that you feel much better!

hi you really perfectly describe all the symptoms of Sjogren's syndrome especially when you talk about the dryness. it can have neuro type issues like the ones you describe. I would suggest a consultation with a rheumatologist or an oral immunologist for a review of your symptoms.

Just want to reassure Starr also that the symptoms you describe can be classic mono too and if you have a diagnosis of mono then the likelihood is that it is mono causing the symptoms and nothing else.

I know everyone is trying to be helpful when suggesting other things that could be wrong but I really don't want people worrying unnecessarily either - whilst at the same time if there are any concerns about anything it's always wise to check in with the doctor of course. I'm afraid I don't know enough about Sjogren's or anything like that to comment, but just want to reassure that the vast majority of people with mono can experience horrible, intense and wide-ranging symptoms for an extended period but then make a full recovery.

Certainly it's always wise to discuss concerns with doctor / consultant though if unsure or for reassurance.

Craig

I think any sensible approach will simply rule things out which can often be done by seeing the right sort of specialist to evaluate symptoms. I think that classic symptoms of mono, yes, but a full work up would obviously rule out anything else going on. It's not about worrying about symptoms. In fact it's the opposite of that. I was constantly disregarded and told to 'not worry' about symptoms I had going on. That was a bad way to live really with symptoms not being treated and being dismissed as all in my head or due to stress (I am the least stressed person I know).

The sad fact is that doctors are constantly dismissing and overlooking symptoms based, often, on little knowledge themselves and an inability to diagnose tricky disorders. They are failing continually to refer people on when they don't have answers.

That results in people suffering often needlessly. The illnesses I talk of are not a death sentence and one can lead a full and normal life with the appropriate treatment of which there are many out there. Venus Williams is a very famous sufferer of Sjogren's.

The fact is, with early detection, diagnosis and treatment people have a better chance of going into remission and leading a very normal existence.

That's not to say that this lady has anything like that. But if you're worried enough or feeling unwell enough to be looking for answers on here then I think a medical investigation should be forthcoming. I know, I suffered needlessly for a lot of my adult life finally getting a diagnosis close to 40. I have now been in remission for 3 years with no treatment and 5 years with treatment. Our wonderful NHS when it works is amazing. People should have access to appropriate diagnostics and treatment options if necessary. Knowledge is power. It, in the end, can only help.

how severe/often were your headaches STAR?

Hi Craig,

Thank you so much for your prayers, reassurances, and the vitamin recommendations! I'm thinking vitamin deficiency may be what's making me crash so hard, I definitely need to look into those. I just wish the doctor would have been right in saying it would probably only last 2 months...

Thanks for your kind words Ciela. It's so hard I know, the doctor told me too it would only last 6-8 weeks. I think it's the common line they give everyone but in reality unfortunately it can take a good bit longer, but it doesn't mean to say you won't get better or get through this because you will.

I've not had a great weekend myself, last couple of weeks have been hit with some real neck pain and it's been intense and frightening and panicking me a bit, feeling a bit overwhelmed, had been doing much better lately as well and just praying for God's help for us all Ciela at this time.

Hoping for a good and settled week ahead for you and us all on the site.

Craig

my dr said 6 weeks this would be gone! wow im on month 7+\almost 8 months......

medical community knows nothing of this dreadful virus nor have they experienced it so it is impossible for them to give us any accurate information, and its a shame we're on our own.......

we all have e/o and this forum has been more useful than an 8+ yr degree/dr !!!!

we'll get there.......

healing prayers to you!!!!!!!

I know Starr it's amazing how so many doctors seem to minimise the intensity and severity of this virus. They seem to dismiss the nasty nasty post-viral effects which in many cases cause these difficult months and months of suffering. And it frustrates me even more the doctors who try to write people off as having CFS if they haven't recovered within six months or a set time frame - absolutely that is not true from what I have learned and come to understand about this time. There is a real difference between post-viral and CFS - post-viral is what the vast majority of people who are unwell for many months go through - it is your body taking an extended period to recover and get back on its feet after such a horrible virus, but it DOES get better. It can take a while but truly it does get better.

I hope you are feeling okay and settled today Starr. Just want to encourage and reassure you that it can be normal unfortunately still to be feeling so unwell after 8 months - I was too but things did get better in the months after that. It's different for everyone, many folks can see a real difference towards the end of the first year. From reading countless stories I see a pattern of that period between 9 and 15 months being often one of real change and a trigger for full recover - it is different from everyone no set rulebook with this thing but truly you will get there Starr, thinking about you still and keeping you in my prayers. God is good and faithful, His timing is perfect and He will get you through this. And you will be much stronger and more resilient in the long run for having went through this horrible experience. Praying for God's healing and eternally grateful for how God brought me through this virus when I was in a terrible way with it - He is going to pull you through Starr I stand strong in my belief in that. Hang in there!

Craig

thank u Craig

i lean on your encouragement and faith!

you are so kind in the way that you take the time to help us all

God bless you and i hope you are doing great!

im on the mend but also feel stuck

i seem to have symptoms that have come and gone

symptoms that are still here/consistent

and old+new

confusing.....

hope your neck is healing/calm

have a great rest of the week!!!

thank u again for your beautifully constructed entries. much appreciated!!!!!!

StarrA

Thanks Starr, your words really help and encourage me too and I'm very grateful. I just know how badly and deeply I was affected physically, mentally, emotionally and spiritually by this virus, and how much others helped and encouraged me during that period - I wouldn't have got through it without amazing family and friends who helped me and encouraged me when I was upset and moaning every day about how I was feeling. Grateful for God and for everyone's patience with me during that and this time also.

My neck has been feeling more settled this week and so grateful to God for that. Just trying to take things one day at a time and keep faith in God with things. I am inspired by your faith Starr, it's much easier to thank and praise and trust God when things are going well than it in the hardest of periods, but I see such great faith in you - hold tightly to that it will see you through!

Also want you to know that I was very much the same when going through glandular fever - there was so many phases / different symptoms at different times. Whilst the fatigue and low grade fever persisted throughout and were the worst symptoms for me, I also had different aches and pains and strange symptoms which often came and went over a period of weeks and then it might be something else the next month. It was so frustrating and hard to cope with and this can be very normal for the virus in my experience. And want you to know that all these things do pass over and your body does find stability and good health again with time - often it's just time with this thing Starr, it's so hard to be patient, but with time you will get stronger and this time will pass over. God is the great healer and I still had a strong belief that even if it can't be seen yet, the manifestations of your healing that Jesus has paid for will be seen soon - so don't give up or be discouraged, you WILL get that breakthrough. Just take it day at a time though and coping with and keeping going through each day's challenges with this thing is enough for any day when dealing with this, and God will look after the bigger picture.

Hang in there and still keeping you in my thoughts and prayers! Even though you might be feeling weary now fear not because God's strength is going to give you the victory over this thing I truly believe!! Thinking of you and hoping for a good day today.

Craig

thank u

i need to pay you for being my mono/ebv therapist

-:)

you are of great wisdom and comfort

this is very trying for me

i am anxious to heal as i have things in my life that are on hold because of this and pending and when i heal i can only figure things out- thats tough

the symptoms are scary but scarier is not knowing when ill live my full life again

i feel like time is standing still and not much changes

ive had symptoms come & go

yet persistant ones from the start even through now

when does it all fade

in back of my mind still feeling like is it something more?

makes you so uncertain of yourself the future your life

this is not good that people have to endure this.....this is no joke!

im glad youre finding yourself well and calmer Craig

i pray 24/7

I need God to continue to heal me as i have a great life to get back to!

time is annoying

take care God bless you

Hey Starr,

It's only because I went through the same struggles and deep lows with this thing that it's important to me to let you know that there is recovery and there is good and full health after this thing Starr - truly there is, even though I know at times doesn't feel like it when going through it.

The uncertainty and unknown of it all is so frightening Starr and when you don't see or feel a change over a period of time it really is so hard to keep hanging in there and thinking and feeling positively, even when so badly you want to be able to. My confidence really took a terrible knock with this thing Starr and it took a little time to rebuild, but it does rebuild as you start to feel better and yours will too. Rest assured God hears all your prayers, it's so hard when we don't understand why or don't seem to see the answers manifesting the way we had hoped - but God does want you well Starr and is working for your recovery, He won't let you down, it might not be in the way that you expected or hoped even, but trust HIm Starr He loves you and is going to get you through this and back to full health, I still truly believe that.

It's always wise to keep checking in with the doc and asking them to monitor blood tests and things Starr, hoping doing that can put your mind at rest about thinking there is something else going on. Because this virus is so intense and long-lasting, it often tricks you into thinking something else is going on when in the vast majority of cases it is the mono and nothing else, and it's just taking that frustratingly extended time to heal and recover from.

My experience Starr was that the second year, whilst still fragile and in recovery, was SO much better than the first one, anything in that first year can often feel like a nightmare and it can for some be into that second year before a real breakthrough and progress is seen - hopefully that won't be the case for it to be as long as that but just want to reassure you that recovery does come and everyone just recovers at different rates with this thing. God willing you won't have to go through anything as intense or horrible as this last year or so again Starr - things will get better! Don't give up or lose hope - God is a good God and a God of hope. He will restore to you joy, peace and health, remind yourself of His truths about healing daily, that's Jesus has already paid the price - it is done. And even if you can't see the manifestations right now, that doesn't mean to say that you won't get that breakthrough and full healing from the Lord - you will Starr I believe that 100% for and with you at this time so hang in there!

Hoping for a settled and better weekend - just one day at a time still - keeping you in my prayers and agreeing with all your healing prayers to the Lord Jesus.

Craig

thank u Craig

you are a true man of GOD

thank u for all of your input

you are very helpful!

Thanks for your kind words Starr, I really appreciate it, I wish I were more Godly in my actions I struggle too a lot of the time. Just grateful for His mercy. Hoping you are feeling okay today, still rooting for you!

Craig