looking back, was this a symptom of ME?

Before i got ME, i was a bit of a fitness fanatic. Not as much as some, but i would swim as much as i could, play football (that i miss SOOOOOOO much) and do resistance training, cycling, rowing etc etc.

Anyway, one day all of a sudden i got shin splints in both legs - both legs went at the same time and i suddenly could barely walk. I rested up and one leg healed. THe other didnt. I saw some consultants, and had some tests, including a pressure test in both my legs. This consisted of a plastic tube inserted into the muscle filled with saline, and on the other end a machine with a pressure sensor of some kind. They got me to run on the spot for ten minutes or so.
The result was that the pressure in each of my legs was way higher than normal, normal being (if i remember correctly) 20-30, and my reading being well over 100. In fact, the pressure was enough to propel the plastic tube out of my leg and spray blood all over the floor. lol.

On the back of this i had compartment decompression surgery. After that painful experience, i recovered slowly but no improvement in the shin splints. My shin remains in a permanent state of swelling, and is very bumpy. Testing after the surgery showed the pressure has reduced considerably, but no improvement in the shin splits.
Just as bad, my legs get very painful now if i do anything (walking up just a few steps is a killer) and it feels like my leg muscles have no room to expand.

Had it not been for ME i would have gone back to have more surgery to remove the damaged muscle and apparently it wold regrow less of a mess. Would have been very painful apparently - as if the compartment decompression wasnt painful enough!

Anyway, i just wonder sometimes, was a factor perhaps in the continual swelling and non repair of the muscle, something to do with ME.
I think the answer will be no, but its on my mind and i just wonder...

 

Hi snowathlete, i never had any testing on shins like u had but shin/lower leg pains were very severe when i first came down with cfs. I use to be able to tell i was going to crash when the leg pains came on. I would have the worst nights with these leg pains that in the middle of winter i would take baths at 2 or 3 am to ease my leg pains and had this linament they used on horses i would but on my legs and then wear track suit pants to keep the heat in. After a few days of these pains i would be basically in bed for 2-3 days unable to really function, toilet breaks only. I had a sleep study done and was never diagnosed as restless leg syndrome but i think its different anyway to RLS from what i have read. This would have been up there with some of my worst symptoms of cfs when i was first ill with it. Strange how something like this can be so bad and hard for alot of people to realise sometimes that these leg pains can really impact your life.

I still get it occassionally but have it kept under control with neurontin or lyrica, certain meds make it worse like mirtazapine, seroquel and some antihistamines, mainly these thing i find useful for sleep which is a bugger, so use them rarely.

cheers!!!

 

When we finally know a lot more about ME, my guess is that these very difficult, painful experiences beforehand may very well be related. I had a torn muscle in my neck that never healed normally but formed a hard capsule like a golf ball which was always in spasm. It pulled on the neck vertebrae causing pain all the time. I had to avoid sitting, especially reading or anything with my head forward, for 8 years during which I lost my fluency with reading. Had to re-train myself to read after the worst of the neck pain went away. What finally helped was an serious accidental re-injury, which I guess opened up that area again, followed by a really skilled chiropractor and upper body work. What I am trying to indicate is my sense that unusual body reactions to injury or unusual problems and pain could very well be signalling that one is headed for the breakdown lane.

 

Hi, Snow.

My guess is that the compartment syndrome was not a symptom of ME, but it could have contributed as a cause of ME. According to the Glutathione Depletion--Methylation Cycle Block hypothesis for the pathogenesis of ME, anything that constitutes a stressor, whether it is a physical, chemical, biological or psychological/emotional stressor, will contribute to raising the secretion of cortisone and epinephrine (adrenaline) and if the combination of stressors present is long-term and severe enough in a person who is genetically predisposed to develop a functional B12 deficiency and a methylation cycle block, ME onset will occur. The reason why such a wide range of stressors can contribute to ME onset is that the body's nonspecific stress response systems respond to all of them in the same way, so that they can be considered as adding together, even though they can be quite different from each other. Were there other stressors also acting in your life at the time you developed ME? I have interviewed many PWMEs by questionnaire about their histories prior to the onset of ME, and I often receive responses reporting what seem like "perfect storms" of stressors unfortunately occurring at the same time as each other.

Best regards,

Rich

 

Thanks everyone for your replies!

Sounds like we may have a similar problem heapsreal. I had a sleep study last year, which recorded lots of leg movements, about 20, but it wasnt restless leg syndrome i was told. I also had a drop in oxygen each time the leg movement occured.

Rich, it was certainly more stressful than I expected. The surgery effectively leaves the wound on the sheath open, and so you get alot of bleeding into the lower foot. My foot swelled up huge and i had to keep my leg elevated for a few weeks. If i had known it would be that severe im not sure i would have done it.
So that was certainly stressful. I had quite a stressful job, but it was one I hugely enjoyed, so it seemed like good stress - but of course my body probably just responded as with any other stress. In the years leading up to the ME i also had a stressful house move, job promotions and our wedding. So there was stress - but pretty standard i would say. I suspect that it in combination with other factors (perhaps stress on the immune system) lead you down the road to ME.

I suspect stress is a factor in onset too. I had an adrenal saliva test when i came down with ME, but before i was diagnosed, so i was still working. I would say that working with ME for coming up to a year before i got a diagnoses was very stressful, because each day i was just trying to keep going.

The other thing that supports this theory for me, was that when i got a diagnoses, i straight away went on sick leave for an agreed two weeks. Within a day or two i felt massively worse, which i think was the sudden let-go i experienced at having a diagnosed problem; I no longer had to force myself into work.
Unfortunately that downward trend lasted several months before leveling off, and i never made my return to work.

 

I've had a problem with shin splints too and it's been much worse since my CFS got bad. I don't know if there's any connection but it's just one of the many things that seemed to go wrong all at the same time. Sorry you've had so much trouble even after surgery. I've also had severe muscle loss with CFS. I don't know if that is relevant at all to your situation.

 

Yeah thats the same for me too. I have had muscle loss due to the lack of exercise. Its very frustrating. One of the most annoying things about ME/CFS for me.

 

Hi Snowathlete, something in your post reminds me of a situation i had when i first cam down with M.E. I was quite fit (although i had problems with stamina and increasing fitness levels beyond a certain popint was impossible) anyway, i cycled a lot and swam a lot, a good deal of walking too especially up big hills pushing buggies with 2 kids on and laden with stuff. I started to get terrible recurring pains in my shins -not RLS -ive had that too. My husband who is very sporty suggested it could be shin splints. The pains carried on until i had to slow down due to becoming more ill and havent ever come back since (and of course ive never been as active again sadly)
Take care, Justy.

 

Just anecdotally, I have noticed that PWME frequently have problems of pain and inflammatory type symptoms which persist in the areas of the body they use most. So a muscle that is used will frequently react in a painful way.

This does not correspond though to actual current damage in that muscle but seems to persist more like a muscular/neurological "memory " of use that is interpreted as pain and inflammation.

 

I hate that, too. When I had to give up exercise altogether it was difficult. I never had good upper body strength and I had to work out for that and I also liked doing core exercises. Now my lower back hurts with lack of core work and I have no upper body strength at all.

 

Thanks for starting this thread Snowathlete - very interesting. I can relate particularly to the leg problems. I have had shin splints in the past and also achilles tendon problems. But most recently (the last 2yrs!!) the problem seems to have migrated further down and an ultrasound has shown that I have plantar fasciitis in both feet. I've had the painful cortisone shots, icing etc....nothing seems to work....very painful. Even just keeping my knees bent in bed with weight on my feet is sometimes unbearable. I've also got a lipoma on my plantar fascia on one foot. I wonder if this is all a result of deconditioning due to having had ME for 18yrs now I also think that added inflammation which is a side-effect of my recent gcmaf treatment has aggrevated it all.

 

I myself think the answer to that may be possibly. Many of us just dont heal well.

I myself got a frozen shoulder before the age of 40 years.. The orthopedic specialist I saw for it, told me that frozen shoulders in someone this young usually are caused by something autoimmune going on. (frozen shoulders happen when the body dont heal in the proper manner).

I found so many people at ME sites with frozen shoulders that I suspect it is far more common in us (thou we are being less physical then the general population so one wouldnt expect we would be injuring ourselves so much).

I think I may of had shin split too when I was younger (possibly my early ME days). I had pain and a bump there for a long time.