in pain and worried...

[dbc]

Hello. I had my hemorrhage on May 24 - 12 days ago. I spent 8 days in the icu and have been home for 4. I am struggling with my pain control - needing to take fioricet every 4 hours and oxycodone every 6. The neuro doctors told me the pain may spread down my neck and spine which it has. My neck is so stiff I can't bend it forward and my spine aches and spasms. What they didn't mention is if thisbpain can also go down to your "butt" and hips and upper thighs - which mine has. I had this when I left the hospital but thought it was from laying in bed for so many days. It seems to have gotten worse since I've been home. I feel stiff everywhere. Did anyone else have this pain? Is it maybe from nerve irritation from my spine?.....

[ClareM]

Hi, you are such early days, I was still in hospital at your stage as I spent 2 weeks there. I remember having awful pains in my legs and bum while in hospital. I was told it was the blood dissipating down the spine and it did eventually stop. It was very painful though so keep up the pain relief as you should not suffer unnecessarily. If it continues make sure you ask for advice from your GP or the neuro unit that treated you.

 

Take it easy, rest and drink plenty of water. Did you have any surgery? Feel free to come back and ask questions, we are all here to help and give advice from our experiences.

 

Clare xx

[Daffodil]

Oh bless you, like Clare I was still in hospital for quite a while after but the pain was dreadful even after discharge and I found it tricky. If the pain gets worse, changes or worries you then don't hesitate to seek help or advice from your treating hospital. 

 

Things i I found that helped me  in the months discharge  after in no particular order.

 

• eating regularly and not letting myself get hungry
• keeping my fluids up
• sticking to my meds plan..don't be a hero ! 
• keeping warm
• sleeping in a more upright position
• regular resting
• Very gentle exercise and stretching movements. My mobility was very bad at first so only very small amounts to build up.
• low exposure to technology, short bursts
• setting myself daily goals 
• a heated wheatie bag ( not sure how I explain that but it's a fabric wheat filled bag you put in microwave for a couple of minutes) or hot water bottle on the lower back
• i also used some essential oils to help with my pains, I am an aromatherapist outside my day job having studied it pre SAH so you could seek the help of someone to mix you a blend , I would be happy to suggest by Pm if you can't find anything 

You are very early days so go steady with yourself and don't expect yourself to revert back to how things were. This doesn't often play out like that. Give it time. 

[dbc]

Thank you. I appreciate all the advice. Did you ever experience low grade fevers? I had no fevers in the hospital but am getting them on and off now. I guess the fact that I had a 99.9 temperature when I returned to the ER and the doctors didn't seemed concerned is good - it's just that everything is making me nervous. I don't know what's normal and what's not.

[Daffodil]

Any change in symptoms or escalation shouldn't be ignored. As we can't offer medical advice I think if you experience a fever which is getting worse you should get it investigated. It's good ER docs checked you out and Gave you the ok and I'm sure they will understand and will be happy to check again (and again ) if you need it in future.

 

your immune system will be all over the place right now and your brain runs the show dont forget  so some signals go haywire so rest is really going to be your friend but it's natural to worrry as there's very little out there to say what you should feel like and it's different for everyone 

 

simply put you are going to feel pretty rubbish for a while yet, I'm sorry.  and yes that's going to feel scary, make you fearful but my best advice is that if things feel awful but aren't getting worse then often it's a case of finding a way to sit through that, finding a distraction, resting and giving the brain a chance to heal. 

 

Do do you have help at home? Try not to do too much or to pick up where you left off. This is a start slowly and slow build from when pause was pressed. 

[Chelle C]

Hi, like Claire said it's very early days in your recovery.

I had pain like you are experiencing and was told it was the blood dissipating like the others have said take your meds as prescribed and try go make sure you are drinking lots of water, making sure you are getting lots of rest will also help you a lot, 

 

Try not to over do things at this early stage, your brain and your body have suffered trauma they need time to recover, 

Try to be kind to yourself.

Wishing you well

Love

Michelle xx 

[Irene]

Hi,

I am another one here who will say the pain down the spine into the bottom seems to be a problem post haemorrhage. It does go but boy it was painful when it was there. I don't think mine left until around 3 weeks.  Never a problem later. 

 

Keep being positive, you will see over the coming months how you improve. The headaches change oVer time and you will notice how you are doing more. 

Rest, rest and more rest. Drink 3 litres of water a day,  that is beneficial too. We will all be hoping you see improvements too.

Listen to your brain, it needs rest, it is working extra hard just now, so enjoy these moments of peaceful times.

love

irene xx

[dbc]

Thank you for all the responses and support. My pain has improved over the last couple of days - and now it feels like new symptoms have popped up. I am having a lot of trouble sleeping - I fall asleep and wake up an hour or two later feeling like it's morning already. I am also having terrible night sweats. Now that I am able to get up and move around more with less pain, I am finding it feels like I am drunk - and I know it's not the pain pills because I've only had Tylenol last two days. I also feel deaf in my right ear. I know it's only been a short time but I am so scared and worried i will never feel normal again. I follow up with my primary doctor today. Will be good to get checked out.....

thanks again everyone.

[Skippy]

Hope your follow up went well.  

 

At this point in your recovery the slightest thing health wise will make you panic - naturally of course.  Always consult your GP if you're worried about anything - that's what they're there for x

[ClareM]

As Sami says you are really early in your recovery and everything is going to be out of kilter for a while. You need to rest and take everything real slow. Drink plenty of water and don't expect to feel 100% for some time yet. It's a long road and the best way to deal with it is to just accept it and embrace each improvement - and there will be some even if it doesn't feel like it now.

 

Let us know how you got on with the doctor today.

 

Clare xx

[Colleen]

It has been my experience that my primary care physician has not had much input on issues related to my SAH.  You may need to follow up with a neurologist if you continue to have problems. That said, I found early on that just the stress and fear that surrounded the post-SAH days exacerbated every little ache and pain. I drank a lot of herbal tea in those early days, finding the process of making it and sipping it calming.

 

Best wishes, Colleen

[Winb143]

When I was in hospital I had lots of injections for hydrocephalus and my coccyx  bone hurt I call it bum bone !!

 

Hubby paid out loads on cushions for me and he paid dear.   So he said,  I'd say "ouch my bum still hurts" and eventually he got me a cushion with hole in it for £20.00 it works beautifully ahhh  xx

 

Lumber punch can damage that.  Now my neck creaks  in fact I am a creaking old dear xx See Doc if Worried about anything as stress is not good for us  xx

 

[dbc]

Hi everyone. My lower back and leg pains have subsided. I still have daily headaches - but even more bothersome is that I occasionally feel drunk when I walk - or like I'm on a boat that is rocking. I also find that I am clumsy - spilling my coffee -

or banging into things. I also feel confused at times - like my mind almost goes blank. Is this normal? 

My primary doctor didn't have much to say but I do get to follow up with the neurologist later this week. I'm living in almost  constant fear that I'm going to have a stroke. I'm going to post a separate thread about symptoms Iwas having prior to the bleed to see if anyone had a similar experience. Thanks for all your support.

[ClareM]

Poor balance is often a legacy of SAH, it will hopefully settle in time. Also the losing words and blankness. I think we have all suffered this to some extent but it usually improves. 

That said make sure you mention all this to your neurologist later in the week. Hopefully they will be able to reassure you. 

 

Keep us posted. .

 

Clare xx