Fibromyalgia/ME/POTs and OI with hypertension, seizures etc. and things that help coping.

Before term starts I just wanted to write a couple of how-to-cope posts with these diseases.

Living in the UK, my chances of any in depth tests and medical help are so low as to be vanishing. After facing lots of misinformation, dishonesty and bold face lies from medics the first coping strategy I recommend is READ THE RESEARCH.

Ignorance is not bliss and even though most doctors can’t stand patients who know anything about their own illness, you need to know because they don’t. Be warned; you must use your information with caution. First of all, there’s some astonishingly shoddy pieces of research out there, so be careful what you follow. I’m sorry to say, it’s a minefield out there. A lot of research is not aimed at trying to find answers that will help sick people, it’s …well, frankly it’s difficult to tell what some of it’s for at all.

I have found Phoenix Rising a useful place to get not only the research but some good analysis of it too. It’s not the only place for good research articles but it’s easy to find a lot on one place.

Let’s take a look at some of the symptoms and handling them.

PAIN.

For many, if not most of us with fibromyalgia and/or ME this is one of the worst symptoms and the most difficult to manage. For me at least it’s been worse than the fatigue and a massive contributing factor to fatigue. There are some good meds out there, but each person is different and there is a certain amount of trial and error. Many people with ME in particular have sensitivities to drugs so read the more unusual

I am using Amitriptyline. There’s now some evidence that this works better for those of us with Fibro based pain as it has a good effect on mast cell disorders and there’s some evidence that FM might be a mast cell disorder.

I also recommend gloves and splints used for arthritis. Even an elastic bandage has been useful for me.

Things like those microwave lavender bags can help with mild pain – but to be honest I don’t think many of us with FM/ME based pain get the mild sort.

Often the pain will dictate what you can do. I have a sort of routine for getting out of bed where I wait until I can get my feet on the floor and then slowly put weight on them, then push up through knees and so on. There’s no point me saying “take your time” as your body wont allow you to anything else.

Pain can be a terribly difficult thing to get on top of. Many of us have used a chiropractor and/or an osteopath. Sadly the NHS doesn’t offer good pain management.

A lot of people have dark glasses for eye pain – mine are transission lenses which while more expensive has saved me money on drugs!

Ear plugs help for sound sensitivity.

POTS/OI

This affects us in different ways. Most people with POTS and OI will have tachycardia and hypotension. But there’s a significant number of us whose blood pressure pumps the other way; hypertension.

My system for coping with this is I sit for a lot of activities. Now, it would be better tachycardia wise if I lay down – but it’s not so good for my breathing or practical with the children. If you can lie down to get your pulse to something nearer normal, then do it.

For standing stuff. I take my pulse as I feel it getting higher. Once it’s over 130 I sit down. If I leave it to reach 140-145 I get too nauseous and pre-synocope and that’s just unpleasant. I can usually sit for a few minutes and my pulse will drop to 120 and then I can carry on. Cooking takes longer and I have to do it earlier in the day – mid afternoon for me, to make sure I can actually do it.

You will probably find a best time of day too. For some it’s the morning and some even manage to cook at a normal evening time.

I cook less fussy to prepare food these days – oven baked or slow cooker.

Shower – choose a time of day you can cope. I think a chair or seat in shower is a good idea if you can get one. We haven’t reached that point yet. I do make sure I have been sat down a while first. So far this has worked.

SEIZURES

These are a fairly new symptom for me so I’m not up on all the coping strategies. However I am learning. First, listen to your body. I get an aura and other warning signs. When I had the first ones and had a paramedic called she warned me not to fight them as it makes them worse. I discovered yesterday that this is very true.

Mine are apparently caused by low grade fever and infection. (Hence I’m back on antibios and steroids). I haven’t quite worked out what to do yet, but I think the fact that I have good idea what causes them means I need to get all infections treated asap. In the past I would wait until the infection was really obvious. Can’t be doing that now.

I have another appt with the GP on Thursday and we’re going to discuss stuff. She doesn’t think Gaberpentin or Pregabalin would help as it’s not “epilepsy” it’s a seizure disorder caused by infection and fever. However a couple of folks from Phoenix have recommended an on hand dose of Klonopin. I will ask about it and let you know.

My daughter is complaining that the house is cold as I keep opening doors and windows so that I can’t get too hot! LOL.

This piece of research is all I’ve found on bactierial infection and seizures

Frankly if I’m going to have these diseases and a blog I may as well try and write something of some use. Hope it is of some use to someone sometime.

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