I have only recently had the fibromyalgia diagnosis but I’ve been disabled by it for over 7 years. While this is a home ed blog I hope these occasional posts on fibro and how to live and cope with it are helpful to some people out there.
Deb commented on my post about how the chiropractor had somehow switched off my constant shaking and jerking. She too had all the unpleasant and often embarrassing symptoms that come with fibro but she is still in that horrible soul destroying no man’s land of no diagnosis.
As with so many syndromes and diseases these days medics seem to know only about the narrow group of illnesses that their direct specialism allows. This means that treating the whole person as a person becomes almost impossible. All notion of the person and holistic care have vanished it seems to me. Things like fibromyalgia and it’s close twin polymyalgia are systemic and so it is difficult for a specialist only medic to help the patient with these. I have seen a rheumatologist only once and when she had diagnoses me she simply put me back under GP care. I avoid the GP as much a possible because there isn’t much they can do. I get the pain meds and when yet another chest infection comes I get the steroids and antibiotics and have a go with the in house nebuliser and that is that.
In some ways the accusation that “It’s all in yer ‘ed” has a flip side merit. Mind over matter is important for coping with constant pain, fatigue, slurred speech, falling over…etc. etc. You have to be pretty strong willed to get up every morning with every joint burning and muscles and tendons feeling like they are being cut and pulled. Sometimes just knowing there is someone else out there who knows how it feels can make all the differnce. I recommend Paper Dali’s blog page for that too.
One of my personal irritations about fibro is the fact that as conventional medicine offers so little and so many doctors can’t or wont help patients with this syndrome that the door has been flung wide for the snake oil salesmen. There are loads of “buy my [really expensive] book and I will give you the key to a cure,” sites out there. There is something truly slimy about that. It seems to me if you can’t see the book on Amazon and get independent reviews then the seller has a great deal to hide, so I steer clear.
This is my free advise which you can take or leave:
It seems to me that the root problem with fibro isn’t the amount of pain and fatigue but lack of proper sleep. There’s evidence that we don’t get the body healing delta sleep and so toxins that have built up in the body over the day don’t get flushed through over the night. Hence the constant pain and fatigue. Many GPs will give a short term sleeping pill (I’ve never asked for one). However I have found that since starting a low dose (30mg) of Amytriptylene that my sleep has improved. When the pain is bad I still wake up a lot but I am getting better sleep over all which I am sure has helped the fatigue a lot.
Unfortunately my very high BP (hovering around 160/115) has made my GP decide to take me off the Amitrip. If it works for you and doesn’t raise your BP then go for it. But be aware that BP is often difficult to regulate with fibro so it would be worth keeping an eye on things. I only found out my BP was in bad shape because I was teaching my oldest how to take BPs as he wants to train as a paramedic.
So I am back to codydromel which frankly is like taking smarties for all the good it does and of course sleep has gone too. Ne’er mind. I have to go back to the doc on Fri and I will tell you wha the plan is from there.
Meanwhile I have been looking at what I can do to help myself. There is research that shows that an algae Chlorella helps the symptoms of fibromyalgia and hypertension so I am getting some and will take that as well as the magic Floradix-with magnesium, which I keep running out of and then leaving the next order because of the bloomin’ price. My friend J who has just finished her chemo and is doing well informs me that the children will just have to do without some books and curriculum and I need to buy the stuff. She’s right really because if I am not functioning the family wont function well either; something I have taken some time to get my head around.
Apparently the research finds (I’ve not read this research but I’ve been told about it) that fibro folk don’t absorb magnesium properly so we need extra. I’ve been taking magnesium malate and eating apples (which contains it naturally). My nails are still pretty rubbish so I am not sure how well that’s going.
The other BP lowering and pain managing system that has scientific research to back it up is saying the rosary. Interesting eh? I do the Seven Sorrows one so let’s hope that works in the same way as the usual one. 🙂
So that’s the plan: prayer- chlorella and Floradix with magnesium with the usual sensible eating (cutting right back on sugar which apparently effects magnesium absorbtion) and trying to walk every day (although at the mo the pain is a bit horrid for that but some stretches and stuff helps loosen the clicky joints). Depending on what happens on Friday the other plan is to sort out the curriculum for the kids as best I can and then try and save back some money to see the chiro more often. That’s a future thing though.
I’ll let you know how it goes. I hope these fibro posts are helpful for people out there with fibro or other chronic pain and fatigue disorders.