Scorpio: Will this ever end?

[wantrelief]

Dearest Scorpio - I am so very sorry you have been feeling so unwell for such a long time.  Somehow you courageously manage to get through these awful days....you are such an inspiration to me to keep pushing through.  You must be exhausted though from all of this.  I keep hoping with your holding where you are things will settle but understand your question if you should start a taper or not.  Hopefully a moderator will help with this decision.  I am here, always, to support you with whatever direction you go.  Big big hugs - WR.

[Scorpio]

Hi wantrelief 

 

once again you are here propping me up in this horrible time whilst going through your own awful symptoms.  You are and always have been such a strong support even though you are facing your own daily fears during this horrible w/d. 

 

I just feel stuck between a rock and a hard place, enduring many days of relentless misery with far less days of relief or plunging myself into even more misery. A complete dilemma and I feel I’m going round in circles. 

 

Big hugs

[Junglechicken]

Hi Scorpio,

 

Wouldn't it be great to be able to report something positive?

 

I know how you feel, I really do......the anxiety and the physical pain.

 

My leg is killing me, and I'm convinced I have a blood clot or circulatory issue.

 

As WR says, you're a really brave lady and an inspiration to me too.

 

HUGS,

 

JC xx

[Rosetta]

I sure wish I had a magic wand for you Scorpio.  This is the hardest thing I've ever done.  I have no idea what you should do.  My instinct says hold, but I know it feels wrong to keep taking something that make one feel so terrible.  It feels wrong to "do nothing" as in taking no drugs at all, too, in the midst of WD.  I was just thinking that yesterday evening as I went to bed with Akathisia -- why isn't there a substance that can calm my nervous system without doing more harm?!  Grrrr!  So, I think that's why my instinct is that you should hold just in case a drop will make things worse.  (I'm afraid to take Benadryl for fear it will make things worse.). 

 

I hope you get a window soon! -Rosetta

[Scorpio]

Hi jc

 

god I’m not sure brave covers it as a lot of the time cowering wreck. 

 

I think we are all pretty heroic just getting through each day while going through this hell but the support from each other goes a very long way to helping us all make it. 

 

Im sure as others have said your pain is caused by your back from your bike accident.  I think we are very fragile during w/d on c/t or very low doses as I also as mentioned seem to be made of glass these days. 

 

Treat yourself gently and it will get better.  You have made it to the finishing line and are well on the way to complete recovery my friend. 

 

Hugs

[Scorpio]

Hi rosetta

 

isn’t it hell. I wish I could wave a magic wand over both of us to just lose the worst of the symptoms so we could live at least a semi normal life. 

 

My common sense is telling me to stay with the tiny dose until some stability eventually happens but this is all so scary. I’m so sorry you are suffering with akathesia. I had that when first put on this horrible drug although I didn’t know at that time it had a name. It was awful and I totally sympathise with you. 

 

We have both had semi better days and im sure we will have them again and then they will continue to improve for both of us. 

[JS11]

Hello my dear friend,

 

I take it Jude has given you the flu.  The disease carrying powers of small children are legend.  I am sorry you have this to add to your stockpile of symptoms.  Have you been able to keep anything down?  i always go with soda crackers and gingerale.  

 

The anxiety just doesn't ever seem to falter. It is a true demon.  

 

Have any of the mods given their thoughts about how you should proceed?  I know there is no one right answer but the voices of experience might be helpful.  

 

If you lowered the dose and things were even more symptomatic, could you then go back to your old dose?  

 

I suppose it is worth asking of people who might read this post just how many have held constant at the same dose for over a year.  

 

I wish I could provide some sort of guidance or relief to shore you up.  And my friend you have not lost your positive outlook or your sense of humor.  They are still fighting with you.  

My heart is with you dear Scorpio.

take care,

JS

 

 

 

 

[Junglechicken]

21 hours ago, Scorpio said:

Hi jc

 

god I’m not sure brave covers it as a lot of the time cowering wreck. 

 

I think we are all pretty heroic just getting through each day while going through this hell but the support from each other goes a very long way to helping us all make it. 

 

Im sure as others have said your pain is caused by your back from your bike accident.  I think we are very fragile during w/d on c/t or very low doses as I also as mentioned seem to be made of glass these days. 

 

Treat yourself gently and it will get better.  You have made it to the finishing line and are well on the way to complete recovery my friend. 

 

Hugs

 

Hi Scorpio,

 

Well, you were right, it was sciatica.  Got to have a review in a month's time re: improvement.

 

Thank you for the encouragement, but I have yet to feel like I'm in the "recovery zone".

 

I've been getting chest pains too (latest joyful symptom).

 

Scorpio, we've got your back, and will drag through the proverbial recovery quagmire with us!!  We leave no stragglers.  We're all struggling along and each day is a challenge.

 

HUGS

[Scorpio]

Hi jc

 

well one worry eased for you in that you now know what you are dealing with. Sciatic nerve damage is horrible and hurts like hell without everything else so just look after yourself. Did the doctor recommend any gentle exercises to help repair the nerve. As for the chest pains, mmm, maybe added stress from forthcoming doctors visit. Did you mention it to them. 

 

Thank you for your lovely words, yes I’m happy to be dragged along if it means we all end up in recovery. Today was another miserable day but I did manage to thoroughly clean a bathroom- all of it not just the sink, loo and shower which has been all I’ve managed for the past year. So although moaning every five minutes about the litany of miserable symptoms I kept experiencing I actually achieved something positive. 

 

Hugs

[JS11]

Hello again my friend, Scorpio and JC,

 

 I loved the last line of your post but was unsuccessful in trying to quote just that.  I think the vision of a "recovery quagmire" with no stragglers left behind is a most honorable vision.  

 

And yes my friend, continuing on in spite of being a "cowering wreck," is but one definition of bravery.

love you,

JS

 

 

[Scorpio]

Hi js11

 

thank you my friend for your kind words. Will pm you later on this evening when I get to sit and relax

 

hugs. 

[Junglechicken]

9 minutes ago, Scorpio said:

Hi jc

 

well one worry eased for you in that you now know what you are dealing with. Sciatic nerve damage is horrible and hurts like hell without everything else so just look after yourself. Did the doctor recommend any gentle exercises to help repair the nerve. As for the chest pains, mmm, maybe added stress from forthcoming doctors visit. Did you mention it to them. 

 

Thank you for your lovely words, yes I’m happy to be dragged along if it means we all end up in recovery. Today was another miserable day but I did manage to thoroughly clean a bathroom- all of it not just the sink, loo and shower which has been all I’ve managed for the past year. So although moaning every five minutes about the litany of miserable symptoms I kept experiencing I actually achieved something positive. 

 

Hugs

 

Well done with the bathroom cleaning.  I never look forward to doing it as lots of awkward places to reach and since our bodies have turned to stone, it becomes a bit of an ordeal I know.

 

No, I didn't mention the chest pains to the GP.  My osteo said I had a tight diaphragm, so that is probably related ??

 

Dr said to continue walking but avoid gardening, sob sob.

 

Hugs

[Scorpio]

Hi jc

 

oh what a shame on the gardening but at least it is nearing the end of the growing season and there will be plenty of time for you to catch up once you have repaired. 

 

Dont overdo the walking either - all things in moderation, boring but in our state the best advice we can keep giving ourselves. Like you have had too many injuries over the past few months so now trying to avoid further damage. 

 

Hugs

[Junglechicken]

1 minute ago, Scorpio said:

Hi jc

 

oh what a shame on the gardening but at least it is nearing the end of the growing season and there will be plenty of time for you to catch up once you have repaired. 

 

Dont overdo the walking either - all things in moderation, boring but in our state the best advice we can keep giving ourselves. Like you have had too many injuries over the past few months so now trying to avoid further damage. 

 

Hugs

 

Yes, timing as far as rest goes, not altogether terrible.  Heatwave not coming back that's for sure.

 

Can only manage max of 7k walks these days.  Leg lets me know it doesn't like it anyway.

 

Hugs

[Carmie]

Hi @Scorpio

 

Im so sorry you’ve been having such a rough time. Have u had any reprieve? 

 

How is the cramping? Has it eased at all?

 

It’s so hard when symptoms are bad. I hope u have some distractions that don’t take too much brain power when you’re going through the hard times. I try n distract myself all day in waves just to make it to the end of the days then it’s like: Yay! I survived another day. 

 

Thinking of you n sending hugs🤗

 

[Scorpio]

Hello carmie 

‘thank you for writing and yes the cramping has eased for the time being. Since reaching a year on w/d seem to have spiralled into a worse state the last 7 weeks have been horrible. I do get odd days where I feel better although the anxiety is always rotten. On really bad days I seem unable to do anything but cower on the settee but I do watch tv, read, iPad games, as you say anything to help try and distract. My energy disappears when in a bad way and can’t get through it. 

‘The last 3 days was able to get out and symptoms were a bit easier but today is back to the nightmare. Supposed to be seeing my daughter and 22 month grandson but at the moment can barely function. 

 

‘’Stuck between the devil and the deep blue sea holding this 1mg as concerned I will unleash a whole load of new terror if I reduce as my head is saying wait until more stability but it feels never ending. 

 

Do you have windows and feel better or is it just all waves for you at the moment. 

 

Hugs

[Carmie]

30 minutes ago, Scorpio said:

Hello carmie 

‘thank you for writing and yes the cramping has eased for the time being. Since reaching a year on w/d seem to have spiralled into a worse state the last 7 weeks have been horrible. I do get odd days where I feel better although the anxiety is always rotten. On really bad days I seem unable to do anything but cower on the settee but I do watch tv, read, iPad games, as you say anything to help try and distract. My energy disappears when in a bad way and can’t get through it. 

‘The last 3 days was able to get out and symptoms were a bit easier but today is back to the nightmare. Supposed to be seeing my daughter and 22 month grandson but at the moment can barely function. 

 

‘’Stuck between the devil and the deep blue sea holding this 1mg as concerned I will unleash a whole load of new terror if I reduce as my head is saying wait until more stability but it feels never ending. 

 

Do you have windows and feel better or is it just all waves for you at the moment. 

 

Hugs

 

Hi again Scorpio, 

 

I am very glad to hear that the cramping has eased. I am really sorry though that the last seven weeks have been so bad for you, this really is the fight of our lives. 

 

Yes, it’s certainly not a good idea to taper if one isn’t feeling stable. I hope you stabilise a bit soon. 

 

Ive been in a window for a few months as I haven’t been tapering but I will be tapering again soon. I’m very ill though with CFS n can’t always do the things I want to do, there are days I can’t get out of bed. I have a million distractions though that keep me sane. I’m glad you have lots of distractions too. 

 

I dont really play ipad games, though ages ago I played a lot of Words With Friends when I was going through severe waves. That and another word game called Work Streak were really the only games I played. I love words. I just bought a crossword book again so I’ve started doing crosswords again. I used to do lots of those too. 

 

Again, I just wasn’t to say I’m really sorry that you’re having such a rough time at the moment, but I was glad to hear that you had three days that you were able to get out n about. Let’s hope there are many more of those.

 

Sending hugs🤗

[Scorpio]

Hi carmie

 

well it sounds as though you are one very strong lady and keep fighting even when at its worst. Am I being dense what is cfsn? Like you I love crosswords, also do a game called peak training for the brain which keeps me occupied.  As you say anything to distract and make it to the end of the day when things always seem a bit easier. 

‘I regained my interest in my garden just before the one year anniversary but it went again hopefully it will return. Knitting is another one that is beyond me at the moment.

hope today is a good day for you, hugs

[SkyBlue]

6 hours ago, Scorpio said:

I love crosswords, also do a game called peak training for the brain which keeps me occupied.  As you say anything to distract and make it to the end of the day when things always seem a bit easier. 

 

Crosswords are great for us in WD. I do *very* easy ones. It's satisfying to feel the brain working at some capacity, and cross off items as I go along. It probably helps with neuroplasticity/brain healing as well, to have that gentle cognitive exercise. I do easy ones in magazines.

[Scorpio]

Hi sky blue 

i tend to do the easy ones in the paper but I cannot get my brain around the cryptic crosswords too much like hard work. Nothing more undermining than faced with a puzzle that is too hard to do.  Anything that helps distract us from the misery of w/d. 

[Scorpio]

I am now 16/17 months since w/d and trying this 1mg of cipralex to try and stabilise.  I did have 5 weeks of although still feeling unwell was able to achieve more by going out, including a holiday to Tenerife but still had anxiety which has been awful throughout. 

 

The last two weeks have gone backwards again with new symptoms of itching lower legs but the head burning that wakes me early every morning with the anxiety I find very hard. The only thing I’m grateful for is it seems to stop when I get up. 

 

Symptoms still struggling with are

 

anxiety

tinnitus

loss of appetite when in bad periods

fatigue

social exclusion

nausea

lack of motivation in doing anything I used to enjoy

diarrhea when in bad period

inability to put on weight 

bowel cramping when in bad period. 

‘Burning head on wake up which  today was 2am but yesterday 6.45am. I generally sleep 6 to 7 hours, taking one mg melatonin. On bad periods waking is more 5am. 

 

I am now wondering whether this 1mg of cipralex is helping or hindering any recovery and should I start a 10% reduction if so can anybody help with how I go about it. The amount is tiny and issued from a droplet on the bottle. I take it in a small amount of water each morning . 

 

Any help would be much appreciated. 

 

 

 

[wantrelief]

bump

[Scorpio]

Thank you wantrelief. As always my hero ..

[Altostrata]

Hello, Scorpio.

 

We haven't seen you since August. Have your symptoms changed at all since you started 1mg Cipralex in early August?

 

What time of day do you take 1mg Cipralex? What are your symptoms before and after taking it? Are you taking any other drugs? 

 

Do your symptoms follow any daily pattern?  Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

[Scorpio]

Hello alto

 

i had a five week window of feeling a little better and able to get out more and  able to do everyday tasks. The last couple of weeks I have gone back into a wave with new symptoms as well as all the old ones, the wave seemingly getting worse each day. 

 

I will start a three day journal of symptoms but they are the same as the ones listed above with the itching on lower legs and the burning head being the new symptoms. 

 

I have been taking 1mg for nearly 17 months now and just don’t know if reducing will help or unleash even more symptoms. 

 

 

 

 

[Scorpio]

Hello alto

 

my daliy journal as we discussed

Saturday 25th November 

 

 6.45 - burning head and anxiety waking me

7.15 - 1 drop of cipralex, hrt tablet. Yoghurt. Banana. High anxiety, nausea, tinnitus , diarrhoea 

10.00 - mug of camomile tea.  Anxiety. Tinnitus

11.30 - food shopping.  Anxiety, tinnitus

1.00 - scrambled egg on toast anxiety, tinnitus

3.00 - unable to do anything but sit on sofa. Anxiety high, tinnitus, fatigue

7.00 - dinner of chilli and rice.  Anxiety eased somewhat. Able to enjoy tv

11.00 - bed , read for 30 minutes. 1mg melatonin 

 

 

Sunday 26th

 

2am - woken with head burning, coughing, blocked nose, 

2.30 to 7 - dozed with anxiety , burning head 

7.15 - 1 drop if cipralex, banana, yoghurt. Anxiety, tinnitus.  Bowels improved 

10.30 - camomile tea

11.30 - attempted household cleaning - badly

1.00 - Unable to eat. anxiety, high tinnitus, 

3.00 - cleaning. Anxiety, tinnitus, fatigue. 

6.00 - cooked simple dinner managed to eat it.  Anxiety eased somewhat.  Tinnitus eased somewhat. 

7 - 11.00 - felt better with less anxiety. Tinnitus and able to watch tv

11.00 -  bed, 1mg melatonin, read 30 minutes

 

Monday 27th

 

2.00 - woken with burning head  for about 30 minutes’, blocked nose, 

6.00 - woke with anxiety, burning head, tinnitus  blocked nose 

7.15 - 1 drop cipralex, yoghurt, banana.  Anxiety, tinnitus quieter 

11.00 - went for 30 minute walk, anxious. 

1.00 -  beans on toast. Anxiety eased a little, tinnitus quieter, fatigue. 

2.00 - hairdresser came to house - very anxious but coped 

2.30 - wrote Christmas cards. Anxiety lower, tinnitus quieter, fatigued

5.00 - cooked roast dinner. Anxiety, tinnitus 

6.30 - ate dinner anxiety eased able to watch tv 

11.00 - 1mg melatonin bed, read 30 minutes 

 

tuesday 28th 

 

3.15 - woken with feeling of liquid rushing through body then head burning, anxiety, blocked nose, coughing 

3.30 - downstairs cooling face with cold water

4.00 - bed slept to 8.00 - latest I have slept since start of w/d 17 months ago. 

8.00 - high anxiety, loud tinnitus, nausea, fatigue, tearful, diarrhoea 

8.15 - 1 drop if cipralex, yoghurt

10.00 - unable to do anything no appetite.  High anxiety, tinnitus, nausea, extreme fatigue,, heavy legs, tearful.blocked nose. 

11.00 - on sofa unable to do anything with same symptoms 

11/00 - 4.30 - on sofa with same symptoms slept for one hour then woke with extreme anxiety, loud tinnitus, fatigue 

5.00 - attempting to cook an easy dinner   No appetite.  

 

 

 

 

 

[Scorpio]

Have over the last couple of days gone down with grandsons cold virus which would explain the all night coughing, sore throat and blocked nose. 

 

Feel absolutely floored by it which could well well explain why w/d is hitting me so hard. 

 

Burning head through the night is horrible but disappears when i get up - very strange. Itching seems to have gone just wish the rest of the horrible symptoms would disappear too. 

[wantrelief]

Oh my friend, I am really hoping once the virus is gone you will not be hit so hard with these withdrawal symptoms.  I am very happy to hear that the itching has subsided, although also wish the other symptoms would go as well.  Thinking about you, as always - WR.

[Scorpio]

Hi wantrelief 

 

thank you my lovely friend, your support as always means so much. 

 

Another horrible day today with the added joy of sinuses being nasty 

[wantrelief]

Oh I am so sorry, Scorpio.  You will get through this, my courageous friend, as you've gotten through so many other awful times.  I know how tiring it all can be though. I am really hoping this passes soon and you can get back to a better place.  Big big hugs - WR.  💖

[Flowers]

So sorry dear Scorpio. Thinking of you and hoping for better days.

 

Love from Flowers xxx

[Junglechicken]

Thinking of you Scorpio, sorry I haven't responded to your updates.

 

Hugs,

JC xxx

[Scorpio]

Hi flowers

 

thank you so much my friend for your support when going through your own bad wave,  as before that long window is just around your corner. 

[Scorpio]

Hi jc

 

thank you so much but sorry to see you are stressed with work and now ear infections, nasty thing. Remember to be kind to yourself .

 

hugs

[Junglechicken]

2 minutes ago, Scorpio said:

Hi jc

 

thank you so much but sorry to see you are stressed with work and now ear infections, nasty thing. Remember to be kind to yourself .

 

hugs

 

Scorpio,

 

You WILL get through this wave like you always have.

 

This one is pushing you to your limits, but it won't get the better of you.

 

Yes, tough times for me (six month probationary period to get through) which is an ultra-marathon in my current state.

 

Hey ho, we battle on.

 

Hugs,

JC xxx

[Scorpio]

moderators.  Update

happy new year to all and wishing everyone a healthier year

managed to get through Christmas week with a struggle but since Sunday back down the rabbit hole. 

 

Extreme anxiety. Burning. Tinnitus. Nausea. Heavy legs. Loss of appetite. Si Inability to do anything so this nightmare continues. 

 

I am still confused as to whether I should be still holding on 1mg cipralex or is it aggravating and should I start a slow reduction. 

 

Any comments would be helpful.