A very long flare or mental stress and grief?

[Alecinthesun]

Hello all,

I really would appreciate some advice from the wise people who understand what it is like to be living with this condition. I am not fishing for sympathy but oh my word, life events at the moment seem a little unreal.

My fibro was triggered by a road traffic accident in 2010 and I have been diagnosed with Ehlers-Danlos Syndrome and Chronic Pain State. I had muscle wasting which left me in a wheelchair, then I used an exercise bike and walks to strengthen my legs. Over time my walking improved, it took years though.

In 2019, I got injured again. I was trying to do a PhD with very little reasonable adjustments, one evening, I got up from the desk and heard a loud crack. I went to A&E, my coccyx was bent and blocking my rectum, I struggled to go to the loo. My coccyx was adjusted but then I experienced joint instability issues with my pelvis.

Long story short, muscle spasms were pulling the bones out of place (due to my hypermobility) so I started having Osteopathic treatment, this seems to be working, reducing pelvic pain. However, I am struggling to walk. I am trying to use an exercise bike, it worked before but sitting on it is quite painful due to the pelvic floor muscle spasms, sometimes it feels like I am being impaled! However, my pain tolerance is better with meds so I will keep trying.

I am desperate to improve my walking, I am quite young, I don't have kids and I live on my so having mobility is crucial. My legs sometimes seize up, sometimes I remember what it is like to walk then other times I get pain in my ribs and I lose control of my left leg. It's like I need to remember what it is like to walk, my brain and central nervous system seem to be switched off. It's confusing as to why?

This time last year, I was able to walk and had much better tolerance. I was using the gym a lot to boost my leg strength and even though I had pelvic pain. I lost my grandfather last August, the same month my dad was diagnosed with colorectal cancer. By September, my walking was significantly worse. I continued to use the gym and in November, my pelvis was twisted to the left, and my rib cage was twisted to the right, I thought that muscle strain and hypermobility led to these issues. I had some pretty bad muscle spasms affecting glutes, psoas, intercoastal and my diaphragm. I spent a lot on various treatments but by December my walking ability was non-existent.

All of this year, I have been trying to improve it. Then recently, my mum had a biopsy for cancer, we are to find out the results in 2 weeks. I am struggling to sleep. Could it be stress that is putting me into a permanent flare? There are a lot of other stressful things going on in my life in addition to my parent's situation as well. I am trying so hard working in the gym, going to treatment, walking up and down the garden thoughout the day and late at night, my neighbours must think I am bonkers! I just want to walk again, any advice???

[Judithdalston]

I have just finished reading Dr Monty Lyman’s ‘The Painful Truth’: yes stress, depression, anxiety etc all contribute to making pain worse. My fibromyalgia links to septic shock/ acute pancreatitis 10 years ago, but I have had problems with vertebrae disaligning for over 30 years before that. I had walked 10,000 plus steps daily until I got Long Covid and postural hypotension, which means I collapse on the floor after about 8 mins upright. The last 15 months I have ‘replaced’ the walking with swimming 45 mins. 5x a week…not as adaptable as walking whether in countryside or ambling around a historic town, but must go somewhere to keeping me ‘fit’. I go to a hotel pool rather than a council one as I thought I’d be having to start at 10 min sessions regularly, but found it much easier …good for stretching spine and not as aggressive as much activity, including a bike!

[Gigiruth]

Yes AlecinthesunSo difficult to find peace,posture and balance in our agrivated bodies. Hard to know what exercise helps.

The work of Glenn Wither APPI has helped myself and my sister. Pilates for Hypomobility. He has a pilatesTV channel. We use a Dvd but this is no longer available. I think it is subscription now. Australian physio.

He has programs for different conditions so look for the one that suits. Very precise movements that seem to be not much but make a difference over time.

Check with your own team if you feel it is for you.

We are all so different.

All the best

Take care

Gigi

[Yassytina FMA UK Volunteer]

Hello, sorry too read you have been threw so much and on top family members are ill, it certaintly takes its toll, good you are having a walk outside and going too the gym, all helps too keep your focus and mental well being, I hope everything works out for your mum, have you spoke too your doctor about lack of sleep , it’s totally wearing ☹️he/she may give you something temporary too help you threw this difficult period , please take care of yourself .