Hi Tom,
An interesting post. This is exactly what I said to my wife a few days ago. Even the lightest exercise makes me feel as if I have done a marathon. I was diagnosed in 2008 aged 44 and to be honest wasn't too troubled. However, over the last few months the leg aches have been getting progressively worse. On a scale of 1-10 it usual sits around a 5 but sometimes I struggle to get up the stairs and on others I can skip around. There doesn't seem to be any rhyme or reason - except, I have noticed that it seems to get better if I spend a a few days juicing.
The aches get better after a few days on veg juice (no sugary fruit).
I have no idea whether this is to do with certain food types being removed from my diet which may exacerbate the problem or whether it has something to do with a very low calorie intake.
Michael Moseley did a program about the 5-2 diet and the effect it had on IGF1. I emailed him some time ago and he was kind enough to respond. In a nutshell, he suggested that fasting twice a week AND combining this with a low protein diet could dramatically affect IGF1 levels. I have no idea if this is going to ease the extreme muscle aches, but they have become so bad recently that I am going to give it a go starting tomorrow.
Fasting for 2 days a week AND low protein is going to be a tough one to stick to, but got to be worth it if it helps.

My name is Duncan, BTW

Tom, I've been battling this beast since 2000. For years I journaled everything I did and ate to find some correlation to the joint and muscle pains and the fatigue.....to no avail. There was no rhyme or reason.....what I did find was that doing a Tai Chi routine for Seniors and Beginners and doing light weights every other day did help with keeping my muscles elongated and helped with my coordination. I've settled into that routine and added vegetable juice smoothies .... I don't know if it actually helps or not with the muscle pains but it does keep me feeling better than loading up with a heavy diet. I think every case is different and we have to just find the routine that's best for us...........good luck Tom.

I've been in remission of acromegaly for some seven years.

I have muscle pain mainly in just my left leg. Sometimes it's the hip itself - it's hard in a way to distinguish what pain it is. It's usually worse when I first start a walk or if I've been stationary for a while (such as after driving).

Around eight months ago I was told I was deficient in Vitamin B12.

I don't know if this is related to acromegaly or not.

A deficiency in Vitamin B-12 can cause nerve damage apparently. I don't know if the pain I have in my leg is a result of nerve damage caused by B-12 deficiency or not.

I was on statins (to lower cholesterol) and omeprazole (to reduce acid reflux), but I stopped them five months ago. Statins are known to cause muscle cramps in some. Omeprazole can reduce absorption of B12.

Despite previous blood tests, the cause of the deficiency hasn't yet been determined. I've just had some further tests (as pat of my annual acromegaly remission checkup) and I'm waiting for the results of them.

Trys
www.acromegaly.wordpress.com

Thanks for the replies. it's reassuring to know that I'm not the only one here.

My diet is actually pretty good and I have certainly noticed some improvements since making those changes. However, I'm aware that I do let it slip sometimes. I did some reading on the 5-2 diet, there's certainly a lot of information that backs up the benefits of it.

I think taking up exercise like Tai Chi is something I could definitely benefit from. I notice an immediate relief when stretching.

Thanks again,

Tom

Thanks for your reply Trys.

That's interesting that you mention the B-12 deficiency, I'd literally just been reading about that.

I think the frustrating thing for me is that I haven't been having regular check-ups or tests since my surgery 2 years ago. I have had several OGTT, which I have passed but I can't help thinking that I should be having more blood work - even if it's to check the function of the pituitary. I guess that because I pass the OGTT they haven't seen the urgency to investigate any of the remaining symptoms.

Good luck with your results, I hope they get to the bottom of your deficiency.

Tom

I had surgery 14 months ago for a microadenoma and did well for 3 months. I started having the muscle aches and weakness that preceded the surgery. My IGF-1 has gotten out of the normal range twice but for the most part my endo (#4) does not seem too concerned. I'm 53 and it bothers me to grunt and groan to get up off of the floor!!I just keep trying -- but I did some light Kettlebel exercises and could not move for 4 days!! I might try the diet1

I had my surgery in 1993 for a large macroadenoma. My levels have remained elevated since then but are not climbing higher although I didn't test for over 10 years. About a year ago I noticed symptoms were back, weight gain, my hair is getting thicker again (after years of thinning due to menopause) but more worrisome is the pain in my legs and fatigue. It is exactly as others on this post describe! I am only 55 yet some days I feel like I am 80.

I am Vegan so my diet is pretty healthy, I eat fruits vegetables beans nuts. I try to avoid foods that aren't good for type O blood. By B12 is normal. I don't take any medicine for Acromegaly but do take for HPTN. I am considering weight loss surgery as my weight just keeps going up since the symptoms came back.

I notice I feel better after light exercise but I can only do it 2 days in a row, if I do it a third day I can barely walk.

Anyway just found this group. Looking forward to reading the posts.

Okay - so I had surgery in 05 but the partial tumor removal did not fix the issues with acromegaly. Still elevated and on three - yes - three medications just for acro... along with many other meds. (Three acro specific Somavert/sandostatin/cabergoline....)

I definitely do not do as well as I used to with physical exercise. I used to think I was just out shape but that isn't it. Acromegaly wipes me out. I used to (and still do at times) think I am a weak person but then I try to remind myself that my condition makes things harder for me.

pretty much in the same boat here have suffered for years with fatigue a few things you might want to check out are listed below most are associated with acomegaly the last is the only one i dont suffer from (yet) lol

Diabetes
One of the main symptoms of diabetes, is feeling very tired

Sleep apnoea
Sleep apnoea is a condition where your throat narrows or closes during sleep and repeatedly interrupts your breathing. This results in bad snoring and a drop in your blood's oxygen levels. The difficulty in breathing means that you wake up often in the night, and feel exhausted the next day.

Anaemia
One of the most common medical reasons for feeling constantly run down is iron deficiency anaemia. It affects around one in 20 men
Typically, youll feel you cant be bothered to do anything, your muscles will feel heavy and youll get tired very quickly.

vitamin D deficiency.
can cause muscle weakness

Hypopituitarism
depending on which hormone or hormones are missing. Symptoms include weakness and fatigue

Underactive thyroid
An underactive thyroid gland means that you have too little thyroid hormone (thyroxine) in your body. This makes you feel tired. Youre also likely to put on weight and have aching muscles.

hope this of some help

Hi Tom,

When you first posted this thread I replied that I was suffering with exactly the same 'It feels like I have run a marathon syndrome', and assumed it was part and parcel of the condition and no change of diet / exercise seemed to have any effect. Since then my GP has changed my BP meds. I now strongly believe that it was due to the side effects of Losartan. Within 10 days of stopping Losartan things started improving and now the muscle/joint problems have vanished. May be a coincidence but thought it was worth mentioning.

Thanks for the update, that's very interesting. I'm not on any BP medication but really glad to hear that you've isolated the cause of your symptoms.