Cellulitis – I am taking a battering

For the last week or so I have been battling to stay out of hospital due to a nasty bout of cellulitis. Its unfortunately made me quite poorly, dropping my blood pressure, causing excessive fatigue and making my postural orthostatic tachycardia syndrome symptoms run wild. So I am afraid I haven’t been up to much writing so I apologise if this isn’t up to my usual standard.

 

A week ago when we eventually got some glorious sunshine in the UK I decided to take advantage of it, as for the first time in around six months I had some energy. I spent the Saturday cleaning up our small garden. When I say cleaning up the garden, I mean shuffling around on my bottom washing down the pots that hold our ornamental grasses. It took several hours and it was hard work for someone who hasn’t been able to do anything for a while. I worked for too long and pushed myself too hard as those of us with a condition like Ehlers Danlos syndrome and dysautonomia are prone to do when we suddenly get a surge of energy! I wish I would learn not to do this but I never seem to.

 

As I undressed that night with hubbys assistance, I notice a tiny red mark on my right knee. As it was so small I quickly ran my fingers over it to see if it was a splinter, I had been wearing jeans so I couldn’t understand where the mark had come from but at times during the day I had knelt on the decking. I couldn’t feel anything and it wasn’t hurting so I just went to sleep thinking nothing more of it.

 

On Sunday I woke up and my right leg was sore, my hamstring was particularly painful and my right knee had developed two blisters and was looking a little pink. I brushed it off as possibly blisters from kneeling, I am prone to developing blisters on my skin very easily, anything where my skin rubs against a surface continually and I will develop a blister. Shoes are a nightmare and as a child my feet would develop blisters even when wearing shoes that I had owned for months and had been worn continually. So you can see why I brushed it off.

 

As the day progressed my leg became quite sore and by the afternoon walking was becoming an issue. I grabbed an elasticated bandage and strapped my leg up from my ankle to my thigh. I elevated my leg for the rest of the day presuming that it would sort itself out. I have a great tendency to ignore injuries because they happen so frequently.

 

By Monday my knee was boiling hot and everytime my jeans caught my knee it was sheer agony. I presumed I had an abscess on my knee as I am prone to abscesses due to having the skin condition hidradenitis-suppurativa. By Tuesday my knee was looking like this

 

 

It was agonisingly painful, swollen and burning hot. I knew at this point that I had cellulitis and rang my doctors surgery. My gp who was working from home that day rang me back within 30 minutes and agreed with my diagnosis! I was given a 7 day course of flucloxacillin 250mg 4 times a day. It took a good 48 hours for the red ring that had formed around the red centre to subside. The whole time I felt pretty rough with a temperature and just generally unwell.

 

By Tuesday my knee was looking like this

The swelling had greatly reduced, the red ring that had surrounded it had gone and I was feeling a lot better. I rang my gp to inform him of the progress and it was agreed that I would keep an eye on it. As I was no longer in pain I didn’t push for more antibiotics, the reason being that I have real difficulty in swallowing capsules due to my EDS. For some reason capsules get caught in my gullet and I end up with them stuck in the back of throat for ages which causes burning and foul tasting burps! Sorry if thats too much information. I know now that I should have pushed for them as by late Friday evening the fact that infection had not cleared quickly became apparent.

 

On Saturday morning my knee had swollen up again and my whole knee had turned pink. It was itching like crazy and I was scratching myself to the point of drawing blood. Probably down to the EDS making our skin more fragile. I ended up calling 111 ( in the UK thats the number you call when the doctors surgery is closed, they offer advice and assistance) and getting them to place a call to Devon Doctors on call. I was told that it was likely that it could be up to six hours before I received a call back and two hours if I was really lucky. The call handler told me should my condition worsen and I hadnt heard from a doctor, I would have to call 111 again and they would decide what to do eg call an ambulance or get the doctor to ring me as priority. As my knee wasn’t as painful or as bad as it had originally been I wasn’t unduly concerned. After all last time I had waited 3 full days before seeking advice.

 

Within 30 minutes the doctor rang me, I explained what had been going on with my knee and immediately he prescribed flucloxacillin but at the dose of 500mg. He asked that for the first three doses I double up the tablets to hit the infection hard. The normal dose would be 1 tablet 4 times a day equalling 2g of antibiotics. The prescription was faxed to my local pharmacy and my father collected them for me so I could start them immediately. This is how my knee looked on Saturday morning

 

 

 

As you can see its no where near as bad as when it first started but my knee had swollen and with the threat of a hospital stay and IV antibiotics I was much quicker to act.

 

It explains why all last week I was starting to feel quite ill again and why my postural orthostatic tachycardia syndrome was misbehaving so badly. I felt so weak and fatigued I really couldn’t understand why.

 

The antibiotics are making me feel quite nauseous but I am happy to report 24 hours after taking them I have really noticed a difference my knee is much less swollen and the itching has reduced. The pink area has reduced in size however it is still extremely hot to the touch.

 

For more information about cellulitis you can click on this link NHS Choices. Cellulitis is a nasty infection that left untreated can quickly lead to septicaemia. My sister has been hospitalised in the past with it, hers was on her face as a complication from a horrendous sinus infection that lead to an abscess on her brain. I’ve never suffered with it before however due to the steroids I have been taking to alleviate the awful PoTs symptoms I’ve been having since february I think my immune system just couldn’t cope.

 

Of course nurse Frankie has been looking after me whilst I recover!

 

EDS and Pain

As promised as part of EDS awareness month here in the UK I am dedicating each Mondays blog post to the subject of EDS. However due to being hideously poorly this is being posted on Thursday instead. 


EDS to me equals pain. Some people are really lucky (after all EDS is a syndrome with people affected to different degrees) and have very flexible joints and no pain. Others like me have a great deal of pain and others again have the added complications of gastroparesis and intestinal failure. Despite my pain I still consider myself one of the lucky ones.


I’ve had pain in various parts of my body for as long as I can remember. I don’t recall a day in life where I wasn’t experiencing pain of some description or another. As a child I assumed that everyone suffered with these types of pain and that it was normal. I limited discussions on it not wanting to appear weak, if no one else was mentioning it then there must be something wrong with me if I had to mention it. When I did mention my pain it was brushed off as growing pains or that I was just saying it to get out of something I didn’t want to do

From the age of 16 I had problems with my back, I regularly slipped discs up and down my spine. It wasn’t until I got much older that things took a turn for the worse with my life long companion EDS. 


In 1999 I managed to injure my back quite badly, slipping two discs and I was in excruciating pain. I knew when I heard a very loud pop that I had done something bad. I didn’t make a fuss though as I was in an exercise class and we were lying on the floor stretching out after our workout. Yes I managed to slip two discs lying down. That is how much fun EDS is! I took myself off home after class, dosed myself up on painkillers and went to bed. The following morning although I could barely stand and the pain was so intense involuntary tears ran down my face, I sucked it up and went to work. My boss was not a pleasant person and saw any illness or injury as a personal failing. At every available opportunity he / she would bitch at me calling me a hypochondriac or saying ” they had never met someone with such bad health”. This person never had an ounce of compassion for another human being in their life. When I rang them and informed he/she I would have to go home as I was in too much pain the phone was slammed down on me. The previous attitudes I had encountered when I mentioned I was in pain were still alive and well.


Over the next few years I had a few more slipped discs. I regularly visited a chiropractor who practised the Bowen technique. I confounded her as the manipulations never held. She told me at the end of one session that she knew that there was something wrong with me she just had no idea what it was. She had never come across it in all the years that she had been practising. 


I started to regularly pick up injuries plantar fasciitis in both feet at the same time, bursitis in both hips at the same time. All the time I carried on working with these injuries despite being in pain. My back was getting worse and worse. I could no longer stand in one spot for more than a minute without it seizing and locking up. Despite numerous visits to the doctors no investigations were done, occasionally I would be sent for physiotherapy but most of the time I was just given pain medications. The pain medications never worked they barely took the edge off. If I was using prescription medications I would be self medicating with over the counter drugs. It got to the point where I couldn’t not take pain medications, such was the intensity of the pain I was enduring. I wasn’t addicted to painkillers but without them life was miserable due to the pain being under medicated for years. 


I never got on top of my pain until 2011 and I finally got my diagnosis of EDS. I had to fight to get a referral and even then I had to pay to see a doctor privately. Although this doctor did diagnose the EDS she didn’t appreciate the smallest amounts of movement above the limited activity I did perform daily would have me in agony. She objected to the fact I was using a wheelchair ( something I had used since 2008 as walking caused so much pain in my back, hips, knees and ankles on top of the dysautonomia I was also suffering with). Her reasoning was I needed to be more active and this would reduce the pain, what she didn’t take into account was the severity of my postural orthostatic tachycardia syndrome / dysautonomia. At the end of the appointment she made me walk from her consulting room to reception. A distance I hadn’t tackled for years. She walked behind my husband and I ensuring I didn’t get back in my wheelchair. I should have stood up for myself and told her to —- off but so pleased was I to have a diagnosis I was not going to let anything change her mind about what she was going to write in my official letter of diagnosis.


She proved her point with difficulty I could walk that distance however what she didn’t see was the three weeks I spent in bed recovering from her “wheelchair intervention”. Bursitis flared in both my hips, plantar fasciitis in both feet and my back has never been the same since. In tears I contacted my gp, who after trying me on every drug he could before starting me on morphine reluctantly had to admit defeat and write the prescription. 


We had both held off from that day for so long. Once on this road there was no turning back. There is a lot of emotion about opiates, some people seem to think that if you take opiates and aren’t dying from cancer or some other dreadful disease then you are a junkie / addict. Let me assure you this is simply not the case, I do not and never have taken morphine to get high, I don’t get high with it. What morphine allows me to do is get out of bed and have a bit of a life. Without morphine I would be in bed unable to move due to the severe pain in my joints. I would have zero quality of life. I do not intend to spend the rest of my life staring at four walls because of peoples ill informed attitudes towards opiates. After taking the medication I spent the first time in as long as I could remember without severe pain.


People may argue that I could have tried various different things before “giving up” and taking an opiate painkiller. I would respond with “don’t you think I have tried?”. Here are just a few of the things that I have tried over the years acupuncture, osteopathy, Bowen technique chiropractors, massage, Tens machines, exercise, Yoga, applying heat and using distraction techniques. You see it wasn’t that I didn’t try, it was that nothing worked. I still use applying heat pads / hot water bottles and distraction techniques daily to manage my pain. I will always use these first before resorting to taking more medication. Its never a case of popping more pills I use my medication sparingly. I plan to live a long life and I don’t want to get 20 years down the line and be out of pain medication options.

 

Sometimes I get asked “what joints hurt?” its easier to reply with what joints are not hurting that day. Every joint in my body causes me pain. For the last few days every joint in my body has been burning. The pain has been so intense it’s been difficult to get comfortable as even the duvet ( comforter in the USA I believe) touching my feet has hurt. Its not always this bad most days its a 5-6/10 which is a level I can deal with. At the moment my back and hips have decided they would like to be the centre of attention, next week it could be something else! Some days its a constant battle to keep on top of the pain to stop it spiralling out of control other days I don’t need to touch additional pain killers however those days have been few and far between recently.

 

Like anyone with chronic pain there are days when the pain alters my personality. On a bad day I can become quiet and withdrawn. I can get really snappy, losing my temper at the slightest provocation. A dogs paw placed in the wrong place can leave me writhing in agony. I have a couple of these days a week and they are usually preceded by a night of poor sleep. Poor sleep is the chronic pain sufferers worst nightmare, for me it doesn’t only affect my pain levels but it also exacerbates my dysautonomia. 

 

Over the years I have also noticed that changes in the weather can also lead to increased pain. There is a joke amongst the EDS community that we are human barometers. I have an increase in migraines and joint pain when the weather is stormy. Cold weather is the absolute worst for my joints as it makes everything feel tight and sore. If my legs get cold ( even just a draft on them) it can cause me agonising pain. They don’t change colour like in Raynauds phenomenon but they do go pale and until I get them warmed up the pain can be very intense. 

 

EDS causes me a great deal of pain but I still try to get as much out of life as possible. One day when I was visiting my consultant I said ” I wish I had known sooner that I had EDS, I could have tried to protect my joints”. He replied “would you have lived life any differently?” my answer was “probably not.”

 

Me in bed on a bad pain day!

Octreotide Week Two

After what seemed like a disastrous first week on Octreotide (which I am taking for postural orthostatic tachycardia syndrome and post prandial hypotension) I am very happy to report the last week or so has been an absolute breeze! No side effects and my body seems more than able to cope on the dose that I am injecting once a day.


I had truly forgotten what its like to eat lunch and then not fall asleep / pass out (losing the whole afternoon), you know like normal people do. I’ve found my rhythm with the octreotide as long as I eat within 30-45 minutes of the injection I have no unpleasant side effects. I have noticed that sometimes it can send my blood sugar levels crashing down and it can on occasion leave me feeling a little shaky but as long as I eat on schedule that is quickly remedied.


On Saturday 26th April I managed to completely balls things up (I am on a learning curve here so mistakes are to be expected). I left it far too long between injecting and eating, approximately about an hour. The effect of this was to drop my blood sugar levels and there just wasn’t enough octreotide in my system to cover me during the digestion of my meal. Blood pooled in my abdomen, dropping my blood pressure and to cut a long story short I ended up sleeping away the afternoon. I was so angry with myself because I had messed things up but not only that when I’ve had an episode like that it makes me feel very ill for several hours afterwards. So my mistake effectively wrote off the rest of the day. It won’t be something I will be repeating in a hurry.


I am writing this on Tuesday 29th April and since Saturday I’ve been better at keeping track of the time. I am getting into a better routine and no longer feel so daunted when it comes to injecting myself. I am now contemplating going back up to two injections a day. The metallic taste has gone along with the weird headache I was experiencing initially. It seems like its the right time to move things forward. I know if things don’t go well I can stop for 24 hours and then restart on just one injection a day.


Its very hard having 90 minutes of near normalcy or improvement for me just once a day. The main difference octreotide has made is not having to retire to bed every afternoon after I have eaten. I am managing to spend a whole day out of bed which has been unheard of for quite sometime. With that though comes repercussions, the afternoon lie down used to let me recharge my batteries if I didn’t have a full on episode. It would give me some energy for the few hours I would see my husband after work. Now though by 4pm I am ready for my bed and I am having more joint pain because of sitting up for longer. I have over the last 12 months lost a lot of mobility due to my health taking a further nose dive. I am beginning to regret having 2 sofas in the lounge and wish sometimes I had got a day bed. I am going to have to start taking some time out of my afternoon to just lie down.


Its also hard dealing with the ignorance of some people who assume that octreotide is some kind of magic cure for me. It helps the PoTS issues but it doesn’t stop the pain from the EDS. It doesn’t stop the fatigue the EDS creates or from the PoTS. There is no cure for either of these conditions currently only treatments and for those of you who have followed my blog over the years you know I haven’t had an easy ride trying all those different medications.


So at some point over the next few days I will be increasing my dose back up to two injections a day. Once I have been doing it for a little while I will update you with how its been going.