Category Archives: Chronic Pain

Nasty Side Effects of Cyclophoshamide (Endoxan)

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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!

 

 

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The Aftermath of a Migraine – Stage 4 – Postdrome

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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.

Postdrome

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.

 

Migraine Does My Head In!

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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!

 

 

The Battle Continues!

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Last week my doctor changed me over from daily Azathioprine to weekly Methotrexate.  I couldn’t stand the side effects any longer and it wasn’t really doing much to help my eyes.

I am on week 2 of the Methotrexate, I spend 3 days crook as a dog (the day I take it and 2 days after), horrible but I guess it’s better than the 7 days I felt ill on the Aza.  It’s unfortunate I take it on Fridays because I spend all weekend feeling awful then I’m back to normal again for work on Monday …. Hmmmm that was a bit of bad planning!

I’m starting to wonder if my eyes will ever improve, it always seems to be one step forward and then two back.  It will be 2 years in November that I have been battling the scleritis, can’t believe how quickly time flies.  But it’s not good when you think about it, nearly 2 years and they are no closer to finding out the root cause and really my eyes haven’t improved that much either. I have days where they are so painful I can hardly stand it.

My doctor always calls me a medical mystery and his VIP patient as I’m there every fortnight for my treatment.  I guess when you have something relatively rare happening in your body that they can’t solve you do become a bit of a medical mystery.  I have seen a rheumatologist, and probably about 6 different eye specialists and I’m still suffering with vision loss and chronic daily pain.  The next step is the immunologist; my eye doctor has written a referral so I will see what they have to say when I get my appointment through.

I guess I just need to keep going, keep my mental health well and hope that one day I get some definite answers and a solution to the problem.  I think the key for me is staying well mentally, if i’m good in that department I can cope fairly well with the pain and the daily struggle to see. I’m really working hard not to fall down that slippery slope to depression, so far so good!

 

Beautiful Reaons to be Happy

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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.

A Very Traumatic Time!

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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

A Nice Quote

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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.

Chronic Pain Is Wearing Me Down But I Am A Warrior!

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I like this quote.  As a person who suffers with chronic pain every day it feels real to me, I can really relate.

Every day I go to work and put a smile on my face when inside I am crying in pain.  Some days are worse than others but I have some level of pain every single day without a break.  It really starts to wear you down.  I often moan a bit at work, but my colleagues have no idea of the pain I am in every day.  I get up in the morning and put that brave face on and it stays there for the duration.

My partner is amazing, even when I am trying to put a smile on my face she knows when I’m not doing so well.  Like the quote says she must see it in my eyes.  Oh yes, the moaning out loud probably gives her a clue too!

I rely a lot on strong pain killers but do realise this shouldn’t be a long term solution.  I often try to find other solutions to my pain but giving myself a pep talk and practicing mindfulness doesn’t really cut it when I am laying there in agony.

I try to take it one day at a time.  I used to fret and worry about how long this illness would last but now I know that there is no value in that it just makes me depressed.  Now I just get through each day and relax in bed at night knowing I have conquered another day.

This morning I am sitting in a coffee shop enjoying a skinny cappuccino whilst writing this post.  A positive thing to come from this is the realisation that I am much stronger than I ever give myself credit for.  I don’t let my pain stop me doing things and I live a full and very happy life.  I am a warrior!

How Do You Cope With Chronic Pain?

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Today I’m thinking about chronic pain and I was looking for some ways to cope with daily severe pain and I found the suggestions below on the American Psychological Association website.  I had a read and think that some of the ideas are very valid and would help with certain kinds of pain but it’s not really that helpful to me.  Scleritis is a type of all consuming, agonizing pain that just takes your breath away.

For example when I feel like someone is grinding broken glass into my eye with the heel of their boot it’s not really helpful to me to be thinking about taking up a hobby or telling myself that I am uncomfortable but working towards making a way to deal with it.  In that moment when I am in agony nothing helps, I just want to curl up into a ball, take some endone and forget about everything.  I can’t think when I am in that much pain, I can barely breathe let alone think about positive stuff.

One thing I would like which is suggested here would be to find a support group or forum.  Scleritis is pretty uncommon so there’s not really anything out there that I have found so far.  Found some old threads but nothing up to date.  I think it would help to speak to other people with the same illness and see how they cope with it.  I will keep searching and maybe start up a new thread and see what happens.

I have realised that there is a very big possibility that this could go on for years so I need to arm myself with as much information as I can get as if I have to deal with this hideous pain day in day out for years my mental health will suffer.  I need to find effective ways to cope fast.

For those interested the American Psychological Association offers the following tips on coping with chronic pain:

Manage your stress. Emotional and physical pain are closely related, and persistent pain can lead to increased levels of stress. Learning how to deal with your stress in healthy ways can position you to cope more effectively with your chronic pain. Eating well, getting plenty of sleep and engaging in approved physical activity are all positive ways for you to handle your stress and pain.

Talk to yourself constructively. Positive thinking is a powerful tool. By focusing on the improvements you are making (i.e., the pain is less today than yesterday or you feel better than you did a week ago) you can make a difference in your perceived comfort level. For example, instead of considering yourself powerless and thinking that you absolutely cannot deal with the pain, remind yourself that you are uncomfortable, but that you are working toward finding a healthy way to deal with it and living a productive and fulfilling life.

Become active and engaged. Distracting yourself from your pain by engaging in activities you enjoy will help you highlight the positive aspects of your life. Isolating yourself from others fosters a negative attitude and may increase your perception of your pain. Consider finding a hobby or a pastime that makes you feel good and helps you connect with family, friends or other people via your local community groups or the Internet.

Find support. Going through the daily struggle of your pain can be extremely trying, especially if you’re doing it alone. Reach out to other people who are in your same position and who can share and understand your highs and lows. Search the internet or your local community for support groups, which can reduce your burden by helping you understand that you’re not alone.

Consult a professional. If you continue to feel overwhelmed by chronic pain at a level that keeps you from performing your daily routine, you may want to talk with a mental health professional, such as a psychologist, who can help you handle the physical and psychological repercussions of your condition.