Headaches

Have you had an adrenal function test? If you are so fatigued at this level - especially if it seems worse than before rather than better - you really do need to get that checked - also known as an ACTH stimulation test or synacthen test. It can be done while still taking pred - just to pre-empt that get-out by a GP - and if your potential adrenal function is compromised it is a bit late to wait until the patient is off pred to find out! 

Have you any idea what your BP is? In adrenal insufficiency it can be low - and that can cause headache in some people.

bp first. Marginally high, lower in last 4 weeks due to blood thinning med (post stent). Reacting normally during rehab exercise - they like measuring things.

There's a lot of change occurring at the moment. Exercise in coronary rehab pushing the boundaries of pmr stiffness and twinges while reluctant to increase pred. Basically, had a procedure, not to find out what I can do differently (if anything).

The headaches have been life long. Sometimes better, sometimes worse. Lots of failed attempts to cure over the years. Round about 12 I learned to manage. Part of managing is to "keep going". Harder with pmr as it doesn't like me when I "keep going". The change to pacing which pmr imposed was a big change.

To be honest, fatigue is a bit of an odd term for me. A bit too blanket. I don't relate to it very well. Its currently a mixture of both mental and physical energy. For example the fatigue from hashimoto was overhwelming, continuous and stable. A lost edge. Walking up steep hills was simply tiredness and aching legs the further I went. Fatigue in the sense I use it with the pmr is that feeling of not being able to get started, or the brick wall I run into later in the day where I have to force myself to keep going and finish things, or as I tend to do, stop and rest. It varies with what I'm doing. Unlike hashimoto its like a roller coaster. The loss of mental energy is confounded by not being able to do things as easily, quickly, or reliably as I used to - either age, pred or pmr, or all three. Stress I manage by reducing it.

Many rocks and lots of hard places.

My current plan is to follow the coronary rehab. Hopefully get back some lost fitness. Which hopefully improves mental energy. Discover if the coronary stent has made a difference (I didn't have any symptoms or had symptoms masked by pmr). Within the limits of the pmr of course, though I need to know if the limits have changed, I walked 5km a few days ago, unusually easily, and didn't need a nap afterwards - still pmr stiff, but maybe promising.

Of course there could be other things wrong with me ....

I did write previously to tell you that I am having my very first Bowens therapy next week.

Thank you for helping me to locate one locally.Your link inspired me to find a Bowen Therapist. at a holistic health clinic.

I agree with your comments about massage and PMR. This is what I found in the past when having myofascial massage. It was terribly painful.The private physio who I saw actually caused pain.

Thanks once again.

Lucy.

 

I do hope it helps you Lucy - looking forward to hearing how you get on. I do know a couple of people it didn't help - it does depend on the exact problem but at least it isn't something you keep on with in the hope - if 3 doesn't make some difference it probably won't.

Though one lady on another forum yesterday said she didn't get any help for the problem she went with - but continued for 6 sessions because she was terribly tense and upset about her health and she found it such a help with that, very relaxing and emotionally calming and uplifting.

Thanks Eileen

I take on board what you have written. It is worth a try.

I agree about feeling tense and emotional about ones health. Having a thyroid problem does not help either.

The PMR pain can get you down and one feels that something should be done about it.

At least it is worth a try.

Lucy

That is so nice to hear.  When I went for physio after recovering from broken leg, so that injured muscles et al would be properly strengthened the sessions seemed awfully short.  I paid for an hour and was sent off in about fifteen minutes.  When I complained the young man said something about people with "real" injuries (like athletes), which apparently I didn't have, although the bone broke because my leg was twisted so severely you can imagine what it did to the soft tissues.  I still resent that.  It makes so much difference even if someone simply affirms that your needs are legitimate, that your pain is real and worthy of care.

 

You are so right about that affirmation - but it seems that too many of the medically trained are the least likely to see its need. I think perhaps he might have had his ear bent had he said something like that to me.

I had a similar experience after a really bad break - pinned and screwed and everything else here in Italy. Back in the UK I was dismissed as an inconvenience. When they finally took the cast off after 3 months I was just left - oh, most people just walk... The physio student I was handed over to put me on a bike - I honestly thought I was going to have a heart attack. Several year later I asked a physio at another hospital if there was anything to be done to improve my knee as I was concerned about arthritis developing. She was horrified at the neglect. However - I was told the other day that broken limbs that are pinned/plated are less likely to develop arthritis. Phew!!!!

Thank you all for your advice and suggestions. I will ask my doctor for the adrenal test and have found a Bowen therapist hidden away in Harare. Will make an appointment with her tomorrow.

I will drink more water (in fact will try and find rehydration additives) because the heat is causing one of my more unpleasant pred side-effects to go into overdrive - I POUR with perspiration from my hairline and have to wear a wet bandana and wet cloth round my neck.

My great fear is that this is a "flare" - and the thought of upping the preds after all my work decreasing so slowly is very depressing. Last night the pain from my neck extended down my right arm - and that (neck, shoulders, arm, and at the start one leg - the last mercifully behaving now) was part of the initial symptoms that resulted in the PMR diagnosis. Woe!

Or it could be a mix of shoulder/neck tension that are causing the current problems and merged in with the PMR. It happened to me twice.

Eileen your experience sounds horrific.  At least I did not need any surgery for my fracture. My young physiothrapist left me with the remark that I should come back in however many days it was and I said I would not see him again as it wasn't worth it, (he muttered something about it being paid for by my insurance, which seemed a bit odd, because it's still not exactly free, plus he was wasting precious time as my coverage is rather limited) and I filled in a complaint form at their office. No response.  But it certainly was not right that I went in, he got me to bend my knees to compare their motion, checked their relative strength, and that was it.  I was wearing jeans so he couldn't even see the joint.  No checking if I was doing my exercises right, no evaluation of my gait, no offering of therapeutic treatment (heat, cold, acupuncture, whatever might have been useful). The only reason the appointment took as long as fifteen minutes was because I asked him a few questions, he was going to leave me even more quickly.  But I get the impression that the particular business has become just that, a business where as many people are processed as possible, and their quality of care is suffering.  This is not public medicine (where the waiting lists are intolerably long) but private and I am lucky that my husband's medical insurance for retirees does cover part of the cost of things like physio.

Hi Eileen, after 18 months of reading your rave reviews of the Bowen Therapy, have just had my first (Zim-style) session. Not sure how it's going to repair this PMR-riddled body, but am desperate enough to try anything. Next session on Saturday morning. Watch this space....

What happened then at your first session?

Well the therapist admitted never having heard of PMR - which was a little depressing. But she promised to research it befor my next visit on Saturday. She pummelled my whole body (saying it was a light massage as she didn't know my pain threshold) and was very cautious over my neck - which is my area of extreme pain. I felt really good afterwards and my neck pain was about a 6/10 and I didn't have a headache for the first time in ages. However, woken this morning feeling very tender all over, with headache and neck pain. With Eileen's stamp of approval on Bowen, and her encouragement to us all to "go for it", I'm going to continue regular sessions.

Pummelled? That isn't Bowen - it is a VERY gentle process, done with your clothes on and is NOT massage. However - if it has helped then who am I to criticise so if the tendernes improves, yes go back. Drink plenty in the meantime. I'm far less enthusiastic about massage in PMR - I do go for a massage but I know what I can and can't take.

Google Mitchell Mosher Bowen4life to get more info and even a video - though the lady is wearing less than is usually required but that is so you can see what he's doing.

 

Hi Eileen

I ws surprised to read that this had happened, i.e pummelling.

I nearly cancelled my coming first appointment when I read the word pummelled.

Anyway it seems that Bowens therapy is gentle after all. Phew!

Lucy

If anyone experiences anything that isn't in line with the video on Bowen4life then I'd question it was Bowen-modelled and would really question the therapist in depth. I only suggest it BECAUSE it is such a gentle therapy and often warn against massage which can leave muscles very tender and painful. It doesn't bother me and it usually fades for me after about 48 hours and then I feel better. My Bowen therapists have never left me feeling sore. Different perhaps - but it doesn't hurt.

I agree.

Lucy