~~The Bedridden Club~~

[[lo...]]

Hi sunnygirl

 

couchridden or bedridden - all are welcome.

 

sorry you have been at this for such a long time.

 

Hugs

 

LF 

 

 

[[ra...]]

Hi guys - I am hoping that the lack of people now posting on this site means there are not so many people laid up in bed or the couch any more, which is good and  reassuring to know it can  get better in time. But it does get lonely being still stuck in bed and  not having much contact - Am really going through rough wave at the moment, feeling so damned ill with bad sxs.. And,of course, when this happens all the anxiety, fear and a vivid negative imagination all rev up to the point of my feeling so damned scared that it's just me with some horrible complaint with no end in sight. I try so hard not to let it all overwhelm me, but am not making a very good job of it at the moment,as I wonder can you really feel this unwell and not be seriously ill, or do I believe my doctor who puts it all down to Anxiety!

 

Do hope others are feeling a lot better than this.

 

        xxx

 

 

[[ne...]]

Hi everyone, sorry I haven`t been here for a while but I`m going through a really bad time with this chronic exhaustion. I`m seeing my Dr tomorrow as I had some blood tests last week as he said I shouldn`t be feeling like this!

I`m nervous in case the bloods show up something else but hopefully whatever it is can be treated.

I have thyroid problems but the test for that showed up ok- so its not that. I also take tramadol for a bad back and wonder if thats adding to my fatigue with the diazepam?

Also a blood pressure medicine - I really don`t know ?

 

Which bring me to a post of yours rachsha- I`ve just read thro and caught up. You mentioned the pulse in your neck, this can be an indication of high BP.  It may be whats making you feel so ill?

I don`t know if that`s the cause but it may be worth getting it checked.  They say there`s no symptoms of high BP but that pulse pounding in your neck is a symptom, headaches and tiredness too.

 

I`m like the rest of you - totally fed up with being stuck in bed but by what I read on the site, we will get better.

N x

 

[[ne...]]

Another reply to you racksha- I know just what you mean by lying in bed and wondering if we have some awful illness. I get some really bad thoughts like this and try as I might, I can`t get rid of them. I think it`s the no end in sight that makes it all so bad - if we knew we had a couple more months or a timescale of some sort, then we`d cope so much better.

I`m pleased to hear you`re reading, I`ve got a Kindle and its been my best friend just lately. I`m going through a couple of books a week at least. It`s not to be advised with what we`re going through but I`m reading Stephen King novels at the moment. I scare myself half to death then wonder why my anxiety goes thro the roof

Anyway, hope you feel better soon

N x

[[ne...]]

Welcome sunnygirl02

I`m pretty new here as well.  I see in your signature you take T3 - is this for your thyroid?  Hope you don`t mind me asking but I have thyroid problems too and have wondered about adding some T3 to my levothyroxine.

Hope to catch you soon

N x

[[su...]]

Hi sunnygirl

 

couchridden or bedridden - all are welcome.

 

sorry you have been at this for such a long time.

 

Hugs

 

LF 

 

Thank you! 

 

Welcome sunnygirl02

I`m pretty new here as well.  I see in your signature you take T3 - is this for your thyroid?  Hope you don`t mind me asking but I have thyroid problems too and have wondered about adding some T3 to my levothyroxine.

Hope to catch you soon

N x

 

Hello,

 

Yep, for my thyroid.  I started on Armor then cytomel but this sustained release version brought my numbers to a perfect level without the additional side effects or ups and downs.  I still have all the same original symptoms though so I don't even know if improving my numbers did anything.  AND, I gained 20 pounds after adding it (in addition to the 30 I gained the first 5 weeks off benzos) and have been unable to lose anything even when strictly adhering to a good diet.  It's very frustrating.  Have you checked out the Dr Izabella Wentz website?  They have pretty good info.  So does the Stop the Thyroid Madness site.  There is even an article by someone who went through wd!

 

I noticed you said you have chronic exhaustion.  I do too.  I just wrote a post on this in another thread and will attach the link.  http://www.benzobuddies.org/forum/index.php?topic=129486.msg1729241#msg1729241 In brief, the things I've found that could be contributing to my crippling fatigue and impeding energy production are:

 

Malabsorption of vitamins and minerals in the gut

Low B12

Low Vitamin D

Low CoQ10

Low iron/ferritin

Low B6

Hypothyroidism

Adrenal fatigue

 

Would be happy to hear from anyone who notices anything I missed!  I too am extremely frustrated by being housebound and resigned to the couch for so long STILL, after a lot of  work to improve my fatigue.

 

Feel better people, be easy on yourselves in the meantime. 

[[ne...]]

Hi sunnygirl

thanks for your reply.  I had an overactive thyroid (Graves disease) and had RAI last October. My levels are good at the moment but it does make me wonder if our thyroid problems have something to do with the exhaustion. According to my endo and GP ...no! They say if the levels are good then that`s not the cause.  Its horrible we`re going thro w/d too- as if the thyroid isn`t enough to cope with.

I had more blood tests last week and seeing my doctor tomorrow for the results- they look like the same sort of tests that you`ve had- checking B12 etc. Are you getting treated for all of these? I already take supplements so I`m not sure anything like that will show up on my tests. Also have you tried selenium, my endo recommended it. I believe its good for converting T4  to T3 among other things.

I`ve looked on Stop the Thyroid Madness but I`ll check out the other website too, thanks.

I`ll go and read your other post via the link now.

Hope you feel better soon

N x

 

[[su...]]

Hi sunnygirl

thanks for your reply.  I had an overactive thyroid (Graves disease) and had RAI last October. My levels are good at the moment but it does make me wonder if our thyroid problems have something to do with the exhaustion. According to my endo and GP ...no! They say if the levels are good then that`s not the cause.  Its horrible we`re going thro w/d too- as if the thyroid isn`t enough to cope with.

I had more blood tests last week and seeing my doctor tomorrow for the results- they look like the same sort of tests that you`ve had- checking B12 etc. Are you getting treated for all of these? I already take supplements so I`m not sure anything like that will show up on my tests. Also have you tried selenium, my endo recommended it. I believe its good for converting T4  to T3 among other things.

I`ve looked on Stop the Thyroid Madness but I`ll check out the other website too, thanks.

I`ll go and read your other post via the link now.

Hope you feel better soon

N x

 

Ah.  So you're hyperthryroid while I'm hypothyroid.  Sorry, I don't know much about that!  But it's true, it's so much worse when there are all these other things on top of (and/or because of!) wd.   

 

I do get B12 injections and am taking selenium, thanks for the rec!  I have a lot of deficiencies unfortunately so I'm taking a lot of supplements. 

 

Good luck with your doc tomorrow.  Hope they find something that might give you some improvement and relief! 

[[ra...]]

Nevercantell - Thanks for your comments - glad you can read - but watch the anxiety levels as we don't want to loose you off here cus you've scared yourself to death lol.  Your always a pleasure to chat to - thanks.

 

To all the other biddies on here - welcome to the new comers and hello to everyone else.

 

After having quite a few really rough weeks  recently, when I know Iv'e been a moaning old sod,  I am pleased to announce that today has been my best one this week, as I've had a few better hours this afternoon/evening - Gosh I can't tell you what a relief it is just to feel a little bit better. But I expect you ALL know what it feels like with all these windows/waves, sometimes never knowing from day to day, or even hour to hour how we are going to feel. Anyway, I'm just grateful for this  little break of wellness. So you'll be pleased to hear, not a moan from me tonight.

 

I do hope all of you who are still  bed/couch ridden will soon be up and about, as with Spring almost here it would be so nice if we could get out in the fresh air - Your all in my prayers, so here's hoping.

 

Hugs xxxx

       

 

[[ne...]]

Hi again everyone

 

Sunnygirl- I had my blood results back from the doctor and he checked just about everything and it was all good apart from my TSH which showed 0.02, the range here is (0.35- 3.50). So as you can see I`m overactive.

My endo wanted me tested every 4 weeks as I only had RAI last October.  So two months ago my TSH was 0.02 as well, I reduced the levothyroxine from 125 mcg to 100 mcg - and then last month using 100 levo, my TSH had gone to 0.09 and in the right direction. 

Now its back to 0.02 and I`m not sure whether to reduce the levo to say...100/ 75 every other day?

 

The lab didn`t test my T4 and T3 this time - but last month they were both in a very good place.

My Dr told me to leave the levo as it is - but as you`ll know yourself, the GP`s don`t always know what`s best in these situations.

I imagine he thinks with my withdrawing it may be too much to reduce the levo right now.

I read somewhere that over medication on levothyroxine can cause fatigue - which is my main and worse symptom and wondered if you`d give me your opinion on whether you`d reduce the levo in my situation. Hope you`re getting all of yours sorted too. TIA

 

Racksha- I`m glad to hear you`re having a window .....long may it keep up. And no you`re not a moaning old sod lol. This withdrawal is hell and you`re best to get it off your chest

N x

[[lo...]]

So pleased to hear you are having a window, racksha. 

 

Hugs

 

LF 

[[ra...]]

Thanks NC & LF.  Well, I suppose I should be grateful for the few hours it lasted yesterday - I just keep hoping the window would stay open for a little longer but the damned thing keeps slamming shut - never mind, there's always tomorrow!!!!

 

Hope your both ok.

 

Racksha

 

xxx

[[lo...]]

Oh no, what a shame.

 

I was very low yesterday but am much better today. 

 

Hope you feel better soon.

 

LF 

[[ra...]]

lookingforward -

 

Just what I need today - A friendly word, thanks - I hate bemoaning my lot, as I appreciate we are all sharing the same bed or couch, - You know what I mean. And we can't moan about our lot to family & friends, as they just wouldn't understand and probably think us potty, or a bunch of hypochondriacs too lazy to get up. So it's only those on this journey with whom we can speak freely.

 

As said, I am grateful to get the few hours breaks, anything is better than none, but have to say it really is all getting to me at the moment. I think it's because for yet another Spring I'm still stuck in the bedroom watching the world go by, wanting so much to just be out there, feeling well & normal and able to join in life - I expect everyone on here feels exactly the same. But only time and patience will give us the reward of healing. So I'll hush my mouth and get on with it like we all have to - brave little soldiers that we are

 

Today I know for sure will be one of my swearing days - you know what I mean. So will get off line and have a damned good verbal rant - Thankfully all the family out till later, so I feel some very naughty words coming on!

 

Am so sorry your out  much further and still getting those bloody awful down times. Your obviously a lot more patient and stronger than me - cus you daint moan like what I does -(how's that for the Queen's English lol.) -  But I know it can't be easy for you still stuck indoors.

 

So I send you lots of special  tree-hugs today xxxxx

 

 

 

Nevercantell

 

How are things going with your taper - do hope it's not too grotty a time. You will come through, as we all do - some good days, some not so good, but lots of support for you on here so you won't be doing it alone. Just give a shout when you need us.

 

By the way, thanks for saying I'm not a moaning old sod - You wouldn't say that if you were in my room this afternoon - read my post on protracted Feb 18th 'SOMETHING TO MAKE YOU SMILE'  - you'll then  understand what I was referring to with lookingforward

 

Hugs xx

 

Racksha.

[[su...]]

Hi again everyone

 

Sunnygirl- I had my blood results back from the doctor and he checked just about everything and it was all good apart from my TSH which showed 0.02, the range here is (0.35- 3.50). So as you can see I`m overactive.

My endo wanted me tested every 4 weeks as I only had RAI last October.  So two months ago my TSH was 0.02 as well, I reduced the levothyroxine from 125 mcg to 100 mcg - and then last month using 100 levo, my TSH had gone to 0.09 and in the right direction. 

Now its back to 0.02 and I`m not sure whether to reduce the levo to say...100/ 75 every other day?

 

The lab didn`t test my T4 and T3 this time - but last month they were both in a very good place.

My Dr told me to leave the levo as it is - but as you`ll know yourself, the GP`s don`t always know what`s best in these situations.

I imagine he thinks with my withdrawing it may be too much to reduce the levo right now.

I read somewhere that over medication on levothyroxine can cause fatigue - which is my main and worse symptom and wondered if you`d give me your opinion on whether you`d reduce the levo in my situation. Hope you`re getting all of yours sorted too. TIA

 

Racksha- I`m glad to hear you`re having a window .....long may it keep up. And no you`re not a moaning old sod lol. This withdrawal is hell and you`re best to get it off your chest

N x

 

I'm so sorry I can't be of help.  My thyroid problem is different than yours so I really am not familiar with Grave's/hyperthyroidism or even the levothyroxine that you're taking.  I really don't even use TSH as a diagnostic tool.  I mainly use Free T3 and Reverse T3 tests to see where/how I am.  I also believe once my body is out of a state of constant stress my condition will disappear (that's the hope, anyway!) 

 

If memory serves me correctly WiseWomanWithIssues also has Grave's...perhaps you can message her to see if she has any idea?  Or maybe start a new post seeing if anyone else might know?  Good luck!  You are right to look into everything yourself and not just blindly take the word of your doc, btw!   

[[ne...]]

Hi everyone

racksha - I loved the moaning old sod bit. Usually when I join a forum I try to use my best behavior and it`s nice to go into the deep end and find someone who says it how it is.  I`ll look at your other link so I can keep up. 

 

I`m in moaning old sod mode myself today. I don`t know if you read my post to sunnygirl but I`m having thyroid problems on top of this withdrawal. So I phoned the thyroid nurse who I`m supposed to be able to ask about my thyroid meds. She was very nice and took all my details and promised to ring back this afternoon.......and has she.....nope!    So I`ve been sat here twiddling my thumbs waiting for her call and then it did ring. I rushed (yea right!) I tried to rush to grab the phone and it was someone selling insurance. The air was blue!

My withdrawals going ok-ish if I could get rid of this fatigue. Which is why I NEED TO SPEAK TO THAT BLUDDY NURSE she could advise me whether to reduce my thyroid meds - which can cause tiredness.  How is your withdrawal going - are you having many symptoms?

 

Sunnygirl- thanks for your reply.  I wasn`t sure if you`d be able to help but thanks anyway.  So far with this Graves of mine I`ve tried `listening to my body` and not the doctor - and each time I`ve raised or reduced the meds according to how I feel. So I`m going to do that again tomorrow morning at med time and reduce it a bit. 

 

Apart from all the above I reduced my diazepam last night from .......drum roll ........6.50 to 6 mg    And so far so good today....

I  hope nothing withdrawal-wise kicks off tomorrow as it`s our youngest daughters birthday - and I  really want to take her prezzie over to her in the morning.

Hello there LF as well

N x

[[ra...]]

Neverantell, WELL DONE on your latest reduction - Your doing great and do hope it continues well and that you get a response from that blumin nurse soon.

 

Better warn you that when you read that post I did, you'll either be amused or disgusted - let me know. Cus the swearing really does help to get rid of all the pent up frustration/anger/anxiety and fear. But obviously, it goes without saying, that there is a time and a place for such shocking behaviour - And if you think I'm bad, wait till you read some of the replies lol.

 

Hope you enjoy you little one's birthday tomorrow.

 

                    xxxxx

 

 

2 Questions for my BEDRIDDEN  pals - Guys; I get a lot of inner trembling/vibrations especially lying down after waking - Any one else? And do you know what causes it ? It doesn't bother me as there's no pain, and have experienced this a lot since 10th month, And have seen it mentioned , but am now curious as to what is causing the muscles or nerves or whatever, to vibrate  like this.

 

The other thing I'd like to ask is, Is it normal to have waves/windows alternating every few hours in a day - eg. Mornings bad, followed by sxs easing off a little for a few hours, then returning for few hours, then if really lucky easing again ALL IN SAME DAY ?

 

Regards to all - hoping your not too unwell today.

 

Racksha 

Still swearing lol.

 

 

[[lo...]]

Hi racksha

 

I don't have inner trembling/vibrations.  Just muscles contracting inside my bum for hours every day, front and back.  It is exhausting. 

 

Waves/windows in same day is normal and a good sign of progress.  >  I found it emotionally tiring as I would be ecstatic and sure I was nearly cured then a few hours later would be just as sure I would never get better.  It was crazy!!  That has all gone now and my moods are much more normal as symptoms diminish.

 

After almost 18 months of daily head pressure, it has finally stopped. Just waiting to see if this is s permanent change for the better.  Head pressure has been one of my worst symptoms.  :'( :'(

 

Hugs to my bedridden buddies

 

LF 

 

 

 

[[lo...]]

Hi Nevercantell

 

I take levothyroxine too.  50mcg.  No idea if it makes me tired as I am unwell anyway. Will reassess when on my feet again. 

 

Hope your daughter's birthday goes well.

 

Hugs

 

LF 

[[ne...]]

Hi All

Thanks, it looks like our daughter`s having a lovely birthday. She`s 42 but we still have to make a fuss of them, don`t we. One of my main w/d symptoms is acute anxiety around people- even family. So I didn`t stay long at her house.  Does anyone else have this?  I feel the panic rising and try to overcome it.  Apart from that and this debilitating fatigue, I`m coping ok. 

 

racksha- I read your other thread and its great.    I`m going to shout F... every so often as see if it helps. I`m not sure our single very gentlemanly next door neighbour is going to approve.  But hey ho he`ll get over it. 

LF I liked your reply in the thread - go for it, I say! 

 

LF I`ve been taking 100 mg levothyroxine- a bit of a long story but by all accounts I should be taking 125 mg. I`m only been taking them for a few months and still trying to find my correct dose.  So I`ve raised the amount and I`ll let you know in a couple of weeks if the increase helps the fatigue.

Hope everyone hurry up and get well

N x

 

 

[[ra...]]

Hi Buddies.

 

LF -  So glad to hear the news re the head pressure. What a relief it must be for you after all this time. You obviously feel about that sxs as I do about the damned nausea and GI's which have been the bane of my withdrawal since day one. Anyway,I am, as said, really pleased for you and hope it stays away for good. You say things are better than they were, so does this allow you to be up and about and get out yet? I can't wait for the day when I can get a bit of freedom from staying indoors. I realised today with Easter upon us, that  it's been over a year since I last left the house WHAAGH... 

 

NCT -  Good to hear the birthday party went well. And so glad you could go, even if it was only for a short stay. Yes it's normal to feel as you do at the moment as you've got less and less drug, and your brain/body doesn't like that,so it gets panicky. So quite normal, Infact I think you did really well to go at all - It's amazing what good actors we become during this experience - When one of my sons came to see me a few months ago, I was up and dressed and acted as though I hadn't a care in the world, because I didn't want him to worry and see me as I really am  whilst going through all this - When he left after a couple of hours I almost collapsed on the bed with exhaustion, as I'd used up so much mental energy pretending all was well  -  still  do at times, so my loved ones don't have to be concerned - I think part of it is  a lady thing,- still trying to protect our offspring's feelings!  Anyway, as said, well done you for making the effort.

 

Glad you liked the post and that LF and myself haven't shocked you too much - Re your not wanting to shock your neighbour, or anyone who you'd like to diss - just give them a nice smile and say 'DILLIGAF -  Someone told me it's an Irish word, but anyway - roughly translated = Does it look like I give a F...  - I think it often if someones droning on to me about their tale of woe,  but you must remember to smile when you say it, and they'll probably think it's some sort of greeting lol.

 

Hugs to both xxx

 

And good wishes to all  bedridden buddies wherever you are?

[[ra...]]

Hi you Guys - today is 26th March, 24 hours later than my post above, and I'm actually  having a window in the afternoon, so have been for a stroll around the garden - Gosh, it's beautiful out there in the sun, watching the seagulls overhead and just looking at the sky and me feeling almost normal and not ill with sxs - Please God let it last more than a few hours this time, so I can get used to the joy of feeling like this before it all comes back again. It's such a cruel condition isn't it, tantalising us with so many windows and waves. Anyway, next time I'm on hear having a rant, just remind me of how good a wave feels.

 

 

Hope your all good too.

 

Hugs xx

 

 

 

[[lo...]]

Hi racksha

 

So pleased you are having a window.   many more will come.

 

I have not been so good today but no head pressure. 

 

Not been up and about yet.

 

LF 

 

 

[[ne...]]

Hi Everyone

 

racksha- I just love it DILLIGAF.  I`ll be using that word now and with a smile on my face 

Thanks so much for reassuring me about the anxiety at our daughters house. It`s horrible isn`t it? Like you, I try to put on the brave face when family come here and then collapse back into bed. You`d think we`d be ok around family. 

 

Glad to see you`ve had a window today and got out into the sun. I really hope your window lasts. I made a cut 3 days ago and it hit me today - but it`s not been too bad.  I couldn`t see in your signature whether you`re still taking benzo`s or are you free of them and suffering  still? 

catch you all soon and be well! 

N x

[[ne...]]

Hi LF

I didn`t see your post there. Sorry to hear you`ve not had a good day but it`s good you`ve had no head pressure. Do you get this much?

N x