Aches and pains

[Gunner73]

Evening All

Hope you are all staying safe

Just a question I want to throw out there

I am a fit 47 year old who exercises regularly and have done many big events like the London marathon, prudential 100 cycle and serpentine 2 mile swim after being diagnosed. I have had ET for over 9 1/2 years now and have gone from med to med but been ok on peg interferon for the last 5 years or so

I have been used to getting the odd day of fatigue from the meds over the years but I am wondering if the meds can affect you after time?recently I have noticed myself getting joint pain especially in my elbows plus my stamina has dropped loads and I am waking up feeling like I’ve done a 26 mile run and that’s before I start the day - aches and pains

The reason I ask is that my wife has even noticed.

I still force myself to do my regular exercises as it can only be a good thing surely but I could sit around all day if I didn’t have such strong willpower

I say to myself is it me just getting old or could it be the ET getting worse ( if so what will I be like in 10 years time ) or could it be that I am taking meds every week which must EVENTUALLY affect your body in some way ?????

Wonder if any of you out there are going through the same thoughts or issues??

I am due a check up soon so will be keen to see if my bloods have changed which could explain a bit as I have certainly notice a change in my body?? Feeling old

Thanks and stay safe

[Pte82]

Gunner73, it goes unnoticed yet through stress, sweating, drugs, caffeine and even loud noises we become deficient in magnesium. It’s involved in energy creation, protein formation, gene maintenance, muscle movements, nervous system regulation and calcium management to name a few. Two general information sites for more info are mgwater and krispin magnesium. Also search on “nothing boring about boron.” Then search on boron and joint pain. Restoring magnesium levels is a lengthy process so through these sites and others will be invaluable to your understanding. Loop up magnesium and endurance and see how athletes are increasing speed and building endurance. Then take a deep breath and appreciate the role magnesium plays in photosynthesis.

[katiewalsh in reply to Pte82]

Hi. Does it matter what brand or type of magnesium you take? Also, how long until you see results? Thanks. Katie

[Pte82 in reply to katiewalsh]

katiewalsh, magnesium glycinate and magnesium taurate are two well absorbed forms attached to amino acids that offer their own benefits. I encourage investigating each to appreciate the pairing. Once you determine how much magnesium you need a day, krispin magnesium will help you, you'll benefit dividing the dosage through the day with each meal for greater absorption. Take advantage of boron's enhancing magnesium absorption and slowing loss. I'm using Doctor's Best Mag. Glycinate however well known brands offer good value. You may notice improvement in health conditions as early as a week after including supplements. Depending on the severity of your deficiency or your particular medical condition, it might take as long as six months to see results. If you are active look up Magnesium for Athletes. Dr. Atkins, in his Vita-Nutrient Solutions book, mentions soaking in a tub with Epsom salts (magnesium sulfate) to relax. That's fast relief. Don't overlook high magnesium foods. As always, check with your health care professional before employing any supplement.

[katiewalsh in reply to Pte82]

I live in the U.S. where we have “float tanks”. Before all this, there was nothing as relaxing as an hour in a float tank. They’re filled with Epsom Salt & just wonderful. Katie

[RobPV]

Hi Gunner 73, Can I just ask why you are on meds at all if you are a fit 47 year old with ET? I assume you are in the UK. I am also 47 and have ET/PV. I am in the UK, diagnosed 4 years ago and am only on low dose aspirin.

[Gunner73 in reply to RobPV]

Hi Rob

I have to be on the meds otherwise my platelets rocket

It took them a few years and a few different meds as I said to lower my platelets as every time I was on a new med it would start lowering my platelets my immune system would get used to them and then my platelets would start rising again

Interferon was about the only thing that has worked but I prefer this as I only self inject once a week where with the different types of tablets I was taking loads at different times of the day every day

But yes always tried to stay fit and healthy but still need meds and aspirin to keep my count down?

That’s why I am getting concerns as what would I be like if I wasn’t fit??

[JackLina]

Hi

I too am on Pegasys and suffer crippling fatigue and mega-aches in joints and muscles. I keep up the exercise as much as my mind lets me. I questioned the effects of the drug which I'm assured are cumulative. so yes, the effects do accumulate over time as I have noticed with my thinning hair. Not fun. My hair was thin at the start but now it can only be referred to as 'sparse'. Not great in these days of not being able to use my hair dresser who is a dab hand at cutting it to look fuller!

Mind over matter is all that works for me but the fatigue is my enemy. From playing squash twice a week and yoga three times a week, I'm having a problem making myself remember to even use the stepper!!!! New bike arrives on Thursday. Hopefully that is enough incentive to get me of my ever growing 'bum'! Stay safe. Love to you and yours.

[Gunner73 in reply to JackLina]

Hi jack

Thanks for the response but her I am starting to get concerned as I try to stay fit but am finding it or should I say noticing it getting harder, I have been sort of putting it down to age but I have really noticed it over the last year getting harder to motivate myself and if I do anything I get fatigue or the shakes quickly ?

I am trying to keep fit as i think what would I feel like if I wasn’t looking after myself

It does worry though as if I am feeling like this at 47 what will I be like when I’m 60 ?

I just feel that having meds continuously for all these years must affect your body eventually??

Mind over matter I think and I am always saying there is a lot worse things

Stay safe

[JackLina in reply to Gunner73]

I can only say, 'I understand totally!' We can only do our best and I can't say my best is good enough. It really is a case of mind over matter but if the mind's in as bad a state as mine has been and struggles to recover, then the more we 'don't' get back into the routine, the more difficult it becomes to ever get back there. I am doing less than I ever have and it's ALL down to fatigue and addled brain. Not only am I unable to process things but I forget I'm meant to do them.....

Stick with it and take a look at Adrienne on YouTube for every yoga session you will ever need. That's something else I forget to do!!!!! ATB Penelope

[JackLina in reply to Gunner73]

Hello again. Yes, there are a lot worse things but this is happening to you and this is what you have to deal with on a daily basis. So at present, this is the most important 'venture'. You are the most important person. Have you mentioned this to your GP because fatigue is one thing but getting the shakes when you exert yourself may be unconnected. I can honestly say, I don't ever get the shakes with exertion. I can feel unable to exert myself and if I do I stop almost before I've started because I haven't got the energy but it doesn't cause shaking.

I agree with you regarding the drug intake but there are some things we need to tolerate because the really are the best option.

I'm wishing you all the very best and hoping you find a way to feel better soon.

Stay safe.x

[Loobylou72]

Gunner73 I've just moved onto Interferon so no idea of its effect longer term, but may ask my haematologist as I have an appointment in two weeks. I am 48 and done three marathons,, but a knee op knocked longer distance on the head a few years ago. I now do more weights and HIIT. I don't have anywhere near the strength or stamina I used to have and find I have tremors in my hands now too! My family are all endurance athletes - and take magnesium as it helps with performance and reducing fatigue. JackLina I am using a spin bike and the peleton app at home just now - it's quite addictive and can pick low intensity or a killer session depending on how I feel.

[JackLina in reply to Loobylou72]

Thank you for your advice. You are so good. I had a spinning bike and found it so boring, I sold it. Perhaps I could have used the peleton app for better effect but the bike now lives in France with a lady whose need is definitely 'greater' than my own (far too much French wine, cheese and bread!). As it is, when I get to a certain point, as long as I do it suddenly and without much thought, I'm having a quick spin around the block on my too big bike with the naff saddle! I know that my main problem is my brain. Still working on it and managing to work from home as well, so I'm in a much better position than the majority. All the best.

[flfair]

Hi, take a look at vitamin B12-deficiency. I think a lot of meds deplete B12 and magnesium.

vitaminb12first.co.uk/vitam...

[swimswam]

Hi Gunner,

Before the present situation I trained regularly with a swimming club, and competed in Masters swimming events. I too have found that over the last couple of years since starting treatment for ET (Interferon, now Pegasys) I get far more tired after high intensity training sessions, and take longer to recover from the aches and pains of gym sessions. I am on quite a high weekly dose of Pegasys as my platelets stubbornly refuse to come down into the normal range, and I am over 60. As much as I ‘d like to be at the same fitness level as I was before ET, I have realised that sometimes I now have to ease off and rest if I need to. This seems to have worked, and before lockdown I was still working full time and enjoying my swimming and gym sessions as much as ever.

[Tennismad19]

Hi Gunner

I have ET too and been on Hydroxy for seven years. I also like to keep fit and like you I exercise regularly. Over the last few years (since being diagnosed at age 59 ) I took up long distance cycling as it was easier on my joints than running. I cycled from the UK to the Black Sea (5,400kms) in two separate trips and from Uk to Spain (1400km) in one trip. I walk on average 8-10k a day with my dog, play tennis, do yoga and ski regularly but I have noticed that all my joints are getting more painful and stiff. I am convinced it’s my meds not age - I’ve recently changed from Hydroxy to Anagrelide because of rising platelet levels. Like you I also have days when I feel really exhausted and yet I make myself get up and get on. I feel better for exercise but often don’t feel like doing it because of the aches and pains in my joints. If fact some nights when I fall into bed my knees and shoulders really hurt and prevent me from sleeping.

I’d be very interested in what your Haematologist says about your joint problems as I’m going to discuss it with mine on my next visit.

Tennismad

[Cassie11]

Hi. I am 68 wth ET Jak2+ just on aspirin for next few months. I realise that some of the aches I get are age related but they do seem to have increased since I was diagnosed earlier this year. Had a telephone appt earlier this week but didn't think to bring this up. I'm not as fit as you but I walk my dog a minimum of 2 hours a day, do odd bit of running, pilates and yoga at the moment.

[Loobylou72]

I have had four knee ops so put knee pain down to that but maybe it is the drugs! I have a lot less energy now than before my diagnosis but feel I need to keep going - it’s my little bit of normal in the chaos, even if I am slower and have less strength than I did . I JackLina yes Peleton app is good as it’s not just cycling , they do yoga and meditation too. Do you like that sort of thing more? Loads on Instagram offering free online classes as gyms are closed. Could be an option? Happy to recommend some pages if that’s of interest ? So many options online at present. Great news when you can’t leave home