I have been on the Cyclophosphamide for just over 6 weeks and although my eye pain has got a lot better I am getting some horrible side effects.
The first couple of weeks were great, I was like chemo is awesome, haha then it hit me with a vengeance in weeks 3 and 4 with plummeting blood pressure. One weekend it was so low I couldn’t hardly stand upright without falling over. Fortunately that one has almost resolved itself.
The latest side that I have hit me in week 6, Myalgia! Omg the muscle pain is all over my body and horrible. Every single muscle in my body hurts. My joints hurt too but the muscle pain is worse. I notice it is a lot worse when I get chilly like when the air-con is a little bit cool at work or in bed in the early hours of the morning.
I am finding it hard to walk up stairs, and going for my daily walk feels impossible at the moment, I feel weak and sore, a bit like an old lady actually. I had my flu needle at work today and the nurse really hurt me because she pinched my skin together before putting the needle in. I couldn’t even put my fitbit on this morning because it hurt too much to have it on my wrist.
I hope that this isn’t going to be a long term thing but I kind of suspect it will be. The Endoxan is well and truly in my system so I don’t think I will be feeling better any time soon.
I have to be on it for about another 6 months so joyful times to look forward to!
I guess I need to look at the positives in that it is helping with my eye disease, but when you feel like crap it’s really hard to look at the positives, you just wallow in self pity a bit as the pain takes over.
I am still going to try and do my daily walk, even if it is slower and shorter, I think it be moving will probably help. I hope so anyway!
So I’m over stage 3 of the migraine, the horrible miserable pain and now I’m on day 2 of the hangover. I seriously feel like I have been for a wild night on the booze and then run over by a bus! The worst thing is I am trying not to take any more pain killers as I don’t want to get into a cycle of rebound headaches.
The pain isn’t really bad but it’s just there all the time and very annoying. When I cough or move my head too quickly it feels like my brain is banging around onto my skull. A couple of paracetamol would really help but I’m scared to take any more pain killers as I have been stuck in the rebound headache cycle before and it’s not pleasant. I’m just trying to ride it out.
I’m hoping that by tomorrow I will be feeling a lot better, this little quote says it all, you really do have to recover from a migraine and it can take days – oh joy!
Here is a bit of info on the Postdrome stage for those who don’t know anything about it.
The postdrome stage of a migraine attack is the fourth and final stage. Most people would think that the fourth stage would be a huge sigh of relief and in some cases it could be but the final stage still brings about several different symptoms that can be painful and hard to cope with. Coming down from the third stage of a migraine is exhausting, the pain and misery that was had during the third migraine stage can leave a person feeling weak. The postdrome migraine stage is the fourth and final stage of a migraine.
The postdrome migraine stage has several linger side effects and symptoms such as the extreme fatigue, muscle soreness, head pain and bouts of cognitive confusion. The postdrome migraine stage consists of mild head pain that lingers for a spell. The side effects and symptoms of the postdrome stage often linger for two or three days after the third migraine stage has disappeared.
Argghhh I had the worst migraine over the weekend, horrible pain for 3 days straight. Straight away I knew it was a migraine so I tool a Naramig ….. my heart sank because it didn’t work.
Generally if it doesn’t work they say don’t bother taking another as that one probably won’t work either so I tried everything I had in my meds box. Panadeine Forte, Mersyndol, Endone, Disprin nothing worked and it was really starting to get to me. On the 3rd day I remembered my doctor gave me a sample pack of Imigran and within a couple of hours I was totally pain free … absolute bliss! It was like my head was quiet it was an awesome feeling.
I woke up this morning feeling exhausted and with a small lingering headache in the area where I get my migraine. I hope it’s just going to wear off as the day goes on and not come back. Don’t think I could stand another migraine so soon.
Naramig has worked for me in the past so I was surprised that the Imigran worked and the Naramig didn’t. I guess that’s the kind of beast migraine is, it can be different every time. Mental note, get a script for Imigran!
I’m hoping this week will be a better one and pain free!
I have two hobbies, colouring and reading, I adore them both. Had some treatment on my eye for my scleritis earlier in the week as I am having a very painful flare up. The whole right side of my head was throbbing.
Anyway i’m a bit too sore to colour and my vision isn’t that good this week either so i’m going to read. I would literally die if I couldnt read so lets hope I never go truly blind! I love my kindle so much, when i’m having bad vision I can make the text huge if I need so I can still read.
If i’m reading or colouring my wellbeing is good
I have a dilemma!
Colouring is really good for my wellbeing and mental health, it makes me happy and relaxed and I really enjoy it. As you know I have severe eye pain and vision problems which quite often make doing day to day tasks difficult.
My problem is do I colour on my really bad eye days to make myself feel better and risk ruining a picture that I have put everything into and really like or not colour on those days and potentially feel bad.
Over the last couple of weeks I have ruined two beautiful pictures that I spent hours and hours colouring because my eyes were bad and I was in pain. The pics turned out so awful I didn’t finish them. Doing this seems a waste of my time,
colouring book pages and supplies. Or is it just good therapy, good practice and don’t worry about what I produce?
I don’t know, I’m in two minds really, I colour for my wellbeing mostly, but I also colour to show my friends because I love it and am quite good at it and produce some good work. Showing my friends and IG followers makes me proud as
though I have achieved something, and it makes me feel very good to get compliments and comments, which is also good for my wellbeing.
I guess I need to take it one day at a time and gauge how bad I feel and how much I need to colour for therapy. I could keep a separate book for days that I just need to colour for my wellbeing so that I don’t mess up any more of my favourites.
I dunno, it’s complicated being me!
This is so true, love this quote.
I have got so many health issues at the moment and I’m in daily pain but I am still so happy. It really could be a lot worse. For some crazy reason my mental health is great which is such a surprise considering the crap I’m going through.
I am in a really good place right now and I’m very thankful for that. When the pain wakes me up at night or I can’t see because my vision has gone all hazy I am thankful for the things I can still do to help myself and I’m thankful for the support of my beautiful family.
Life is good despite the hardships and I’m thankful for that.
Had my eye injections last week and it was the most traumatic procedure! As I have mentioned before sometimes I can feel the injections because the anasthetic doesnt fully work due to the inflammation.
This time the pain relief didnt work at all. The doctor stuck the needle in my eye and I nearly jumped off the bed, I was begging him to stop it was so intensly painful. He was holding my head down so that I couldn’t move becuase I was in so much pain I was trying to move away from him, by this time I’m crying. Not just grizzling but full on proper crying and I couldn’t stop. The doctor felt terrible but not as half as bad as I felt! I was so freaked out by it I cried all the way home in the car becuase I know I have to go through it again in 2 weeks and i’m really scared that its going to happen again. I don’t think I could do that again.
I also got an injection just under the eye into the eye socket area and now I have a lovely shiner!
It sucks to have my eyes I really don’t want these injections but without them my vision will deteriorate and it’s bad enough already. I can’t think about the next treatment or I will have anxiety for the next week. I must have been a right bitch in a previous life to have to go through this now! Maybe the next life will be better and I will be healthy, wealthy and gorgeous LOL
I really like this quote. I am going for my eye injections today and will be in a lot of pain for the next few days. This quote reminds me to stay in the present and remember that the pain will pass. I can get through it if i take it one moment at a time.
Haven’t posted much lately as my eyes have been so sick. I am having terrible vision problems, pain and headaches.
I have 3 severe eye problems, keratocous, scleritis and corneal neovascularisation. The blood vessels that are growing into my corneas are large and deep and go almost into the middle. This in itself is affecting my vision but i have the added trouble in the left eye of the blood vessels leaking blood and therefore causing hazyness as the cornea is swollen. I have pretty much no vision at all in the left eye at the moment.
Every fortnight I have injections of Avastin into my eyes. The left eye is fine, no trouble at all, but the right eye with the scleritis is so painful for 3 or 4 days after the injections. Aparantly the pain is caused by scar tissue and inflammation. Every second week is a write off and a nightmare.
I need corneal transplants in both eyes to restore my vision but whilst the blood vessels and scleritis are active I cant have it done. In my doctors words, it would be a disaster as there would be a 95% chance the new corneas would be rejected.
My doctor is trying so hard to fix my eyes but there is something going on with my body thats causing this and they cant figure it out. I really am a medical mystery as I have had pretty much every test possible and they still cant find a cause.
Guess it could be worse but thats no consolation when i am struggling to see and live a normal life.
Good news is I am managing to stay mentally well, no sign of the black dog knocking on my door
Feeling blue today, I feel like I am getting nowhere with my eyes, they just seem to keep getting worse. Still have the opaque spot on my left cornea which I cant see out of at all.
Yesterday I saw a specialist in inflammatory eye diseases. When I got there, there were 7 people in the room, 5 of them doctors waiting to take a look. They all had their turn and then they huddled together talking about me like I wasnt even in the room. Chief doctor then left the room to make a call to my eye doctor.
Bottom line is she feels that the scleritis has cleared up but has no idea why I still have red painful eyes and a hazy cornea. She said im a medical mystery (I already knew that lol), and that my eye doctor needs to take a step back and start from the beginning looking at diseases other than scleritis. Perhaps a type of keratitis.
Just got a call from my eye doctor, he is speaking to an immunologist today and then wants to see me on Monday morning to run some blood tests etc. Hopefully something will show up that is treatable. I realy hope so, I know im a tough old bird but I dont know how much more of this I can take.
I just need to know whats wrong with me, I need a diagnosis so I can read up on it, get a grip on it and beat it.