Extreme Bone Pain

[Lady in Red 01]

Hi There,
I have suffered Bone Pain for approximately 5 months, at present it is in the Extreme range due to me having developed
Bronchitis after having my usual Flu Vaccination last Saturday..

Coughing is the current enemy naturally, however I consulted a different GP..

This time around I wasn't instructed to take more Pain Relief thankfully, she suggested a number of things..

Firstly she understood my thoughts on this issue which is fabulous.
She suggested a broad range of things in the hope something will help..

Pilates, Reflexology, Meditation, and Gentle Yoga, Swimming every day, Aromatherapy..

I do Swim frequently, I will now go Daily and try everything she suggested I have nothing to lose, but everything to gain..

This is a far superior option to the previous Physician that prescribed 100 Opiate Drugs every month.
Which I declined, I certainly would love to be Pain Free but Not by taking Addictive Drugs..
I wish to enjoy life, visit Australia, Iceland to swim in their Thermal Pools to name but a few adventures I intend to undertake..

If I was drugged up to the eyeballs, I'm certain I would be refused entry and rightly so..
Plus the most important aspect of this is my family, I'm lucky to have 2 Sons and
2 Daughters and 5 grandchildren and my husband...

I do not wish for them to observe me. In a Drug Induced Fog..

I am a recently retired Nurse (RN) and I understand the implications of such Drugs.
I fear for those that will Not understand the danger of these Strong Pain Killers..

In my humble opinion folk should be told exactly what they are about to take..

Yes Our Pain is Very Real, we simply need to find Coping Strategies..
I will welcome any suggestions from fellow members who have found ways to cope..

I wish you a nice Evening wherever you are situated on the Globe, we are a rather Unique Group of People and this site along with Voice in the UK, is a life line..

Your Founder Steve is far thinking and the Cafe Catchup is a wonderful arrangement
I'm immensely Envious of the arrangement.
If only we had the same here...

All the Best
Maria

[MPN-MATE Admin]

Hey Maria...

Glad to hear from you as always but saddened to learn that you are currently having to tolerate such pain...

You new GP's suggestions: Pilates, Reflexology, Meditation, and Gentle Yoga, Swimming every day, Aromatherapy... all sound very useful too...

Cycling works well for me...

Have to also agree with your summation concerning opiates, however, used in moderation, they can be helpful as I am all too well aware myself...

The Cafe Catchup, yes... they are a really useful and friendly way to meet others with one of these dreaded MPN conditions. As all of our MPN experiences show us, we MPNers possibly understand better what we are going through rather than that of the greater medical fraternity, whose knowledge levels are often found sadly wanting, in my view...

Maria, I am sure that you too could start your own Cafe Catchup in your part of the UK? Nothing stopping you really... and I am sure that Maz would be only too willing to lend you a hand...

Maria, if you scroll down, you will find a couple of Tabs:

1. Options
2. Attachments

On the former, Options, there is a radio box that you will need to Tick that states: "Notify me when a reply is posted.

Hope this helps, and glad to see that you were finally able to make a new Post on Mates.

Naturally, I wish for you a speedy recovery...

Get well soon Maria

Best wishes

Steve

PS. While I do appreciate all compliments, I am not so far-seeing really. All I have done is mimic the works of others to create an MPN website FORUM for an Australian audience. But thank you anyways Maria...

[Merry]

Hi Maria

You are lucky to have found an understanding GP. They are few and far between. Most seem to just want you out the door with a prescription and a referral to a specialist!

Your coping strategies sound great and I agree with you re the opiates. These drugs, after all are just masking the pain and perhaps through your exercise regime, it may actually lessen.

Unfortunately I am also not able to take part in the cafe catch-ups being on the other side of Oz but I am there in spirit!

Have a wonderful day.
Merry

[KatieB]

Hi Maria,

I am also English and left the UK nearly three years ago to live in Australia as my family all live here. I have ET and was diagnosed in 2006.

I am sorry to hear about your extreme bone pain and entirely agree with you about the strong opiates we are prescribed with to assist us through a painful period. I do not have severe bone pain but have developed a very painful ulcer on my ankle due to the toxicity in the HU I was taking. I too was given codeine phosphate hemihydrate tablets to take together with paracetamol. I was given 20 tablets originally and have 15 of them left! Like you, I hate taking strong drugs and felt my body had enough to cope with.

I am now on Anagredlide but still have to take 1 HU per day. Needless to say my ulcer is not healing. I eventually hope to try Peg interferon but have to wait until the ulcer heals. Sounds a bit like the song, "There's a hole in my bucket.' which I am sure you are familiar with.

I think you should certainly take up Yoga, meditation and all the other relaxing things suggested. I have done Yoga for years but unfortunately cannot continue at the moment with this painful ulcer. I also think you should have goals and places you would love to visit on your list. We try not to give in to this MPN. Not sure which one you have but sounds like ET. I have had some bone pain in my shins and hips over the years but slowly but surely is has disappeared and only rears its ugly head occasionally.

My best wishes to you,
Katie

[Lady in Red 01]

Hello Katie,
How nice to hear from you, although I am rather sorry to hear of your Ulcer on the Ankle.
With good care and time it will heal, but as you say not easy whilst still taking HU.
Yes it does bring to mind the " Hole in the Bucket Song" same applies to me on occasion..

You must certainly be up for a challenge very brave to emigrate to Australia, but sensible to be with your family.
Where do you originate from in the UK ?
I live in Weston super Mare, Somerset.

However I am Welsh from just outside of Cardiff, Weston has been my home for a long time and where I raised my family, my husband is a local..

How interesting that you have done Yoga for many years, it is something I intend to give it a go along with some other items on that list.
I never had the time before, I put my career and family first.
Nursing gives you plenty to think about, my final 16 years were on Night Duty only..

I Retired and thought, " this is my time, our time" last year in the March I was diagnosed with ET by May I knew I also have MF with the AXSL1 MUTATION...

Yes it would be so easy to give in to our MPN, but I'm not that way inclined...
2018 was swallowed up with various appointments and adjusting to my situation.

This year we planned on getting off to warm climes for a month but fate had other things in mind for us...

I seem jinxed at present, I was due to see Professor Harrison at Guys on the 23rd September, I came down with Bronchitis 9 days ago, thus had to reluctantly Cancel with the Professor..
This was the opportunity to see if she will change my therapy from HU to Ruxolitinib.
But Ruxolitinib is exspensive treatment and the Powers that Be are reluctant to prescribe it...
I do have entitlement as I have MF, I suspect they hope to wait until I'm a lot sicker with it.
So yes I also have the Bucket with a Hole in it, so frustrating!
Happily I have another appointment with the good Professor in November.
She is very nice and informative obviously I will remain hopeful..
It's the Bronchitis which has aggravated the lower Back Pain I suffer bouts of, all the dreadful Coughing, I'm rather tired of hearing myself..
I don't normally have Bronchitis yearly, but this is the second time in succession, same last year quite soon after having my Flu Vac in October..
This years Flu Jab was done earlier September as the Doctors are anticipating shortages and All the Who Haa with Brexit has got the Physicians worried about Drugs if we leave the EU without a Deal.
I personally have become very bored with it all, but I do fear for certain issues such as Drug Therapy..

Thus I don't think I will have the Flu Vac in future, it's all rather a lot for our bodies to Process especially with HU 1 Gram Daily on board..

It's 7pm with you, have you had a nice day, you are about to have Summer, as we approach Winter here..
Our days are growing shorter and the Clocks will spring forward shortly, I always think that once Christmas is over I am looking forward to the Spring once again..

So nice to hear from you and I look forward to another chat with you.
I think we briefly chatted on MPN Voice, I have met (in the virtual sense) some nice folk on there and converse with in far flung places New Zealand, a splendid fellow in USA, not forgetting Steve who decided to set Voice up for the Australian Audience!
Along with a few other nice people in various locations in the UK..

I wish you a pleasant evening and a beautiful tomorrow..

Take Care Katie and All the Best to You.
Maria

[Warwick]

Hello Maria
This is my first post I have had 12 bouts of agonising bone pain this year which lasts from 4 to 12 hours been to hospital 4 times including last week as it happened at work and scared the daylights out out of the staff who called the ambulance. The only problem as you say the hospital dopes you to the eyeballs with the green whistle 3 shots of morpheine a shot of fentonil and then cause my leg was shaking out of control some valium for good measure which wipes you out. If you had all that in the street you would be arrested.

My experience is that it starts throbbing in my hips and the half an hour later it intensifies up my spine into my ribs and then into the back of my head. I struggle to breath and can't walk or lift my arms but when it stops I am back to normal it completely goes away. Work is worried its a ticking time bomb demand answers but we know there are few answers. I have not admitted to work what i have they think i have a blood condition

I feel sorry for you if you can't relieve your pain. I've found that when it happens at home taking an anti inflammatory and an Endone can put a dent in the pain

I have post polycythamia myelofibrosis jak2 positive.

Hope you are having a good day

Kind regards
Warwick from kenthurst.

[socrates_8]

Evening Warwick...

I am really sorry to be learning more about how you are struggling also w/ your bone pains.

Maria is still trying to access Jakafi in the UK, which in my own case really helped to settle things down. Endone is the only thing that works for me when my bone pain flares up too... (but it is only temporary relief in my case). Although I have tried just about everything else...

What you have described sounds eerily similar to what I have been through myself, even though I am Post ET/MF

I am sure that Garry, (who is also PV/MF like yourself), would also be very interested to hear what you have been through too Warwick.

You are also much younger than most, who are ultimately diagnosed w/ an MPN, in my experience at least...

Anyways, I do hope that you will come along and join us at the Cafe Catchup this coming Sunday.

Best wishes Warwick

Steve

PS. Who knows maybe we will find another cyclist in you too...

[Lady in Red 01]

Hi Warwick,
Oh dear you are in a difficult situation with Pain in Extreme and Work situation..

Clearly you are in greater need than I with the Bone Pain..
I do suffer on occasion with Lower Back Pain, absolutely not on the same level as what you described..

Powerful Drugs are the same throughout the World, for your leg to be shaking uncontrollably must have been frightening for you..

I notice Steve has mentioned you are young in comparison to many of us with MPN..

As Steven stated I am looking toward a change of Drug Therapy..
Maybe you need to have an in depth conversation with your Haematologist as to how to proceed from here..
I would be interested to know your age, I hope that matters can be improved for you.

I can well understand you wishing to keep your Diagnosis from your Employer..

I live in the UK so I'm not familiar with the Rules and Regs of Disclosure to Employers of a Condition..
If it were me I would seek advice to how you stand legally with regards to your Employment and assumedly Insurance.

I believe your Healthcare is Private ? I would definitely find out where I would stand with my Employers if during another of these serious bouts of Uncontrollable Pain, you fell and injured yourself whilst in the work place.
We all think and hope this will not happen, throughout my years Nursing I have seen many things happen that were Not Expected to happen..

I'm sure you will feel better, once you know how you stand.
Easy for me to say I know, but clearly it is something you need to understand clearly how you stand in this dreadful situation..

We get these Curved Balls, some go to the Wicket Keeper, others we simply have to deal with..

I'm so sorry to read of your suffering and you have my sympathies.
You have to find a way forward to lead as normal a life as possible.

I definitely didn't see my Issues Approaching I simply thought I was suffering Anaemia.
I remember walking out of the Consultation thinking, " what did she just tell me " I couldn't quite believe it and that was just ET.
Within another 6 weeks I discovered I had MF on the Friday and a letter arrived on the Saturday informing me I possibly had another Cancer elsewhere and needed Surgery..
I truly couldn't believe what was happening to me and spent a weekend crying about my situation..
I sought outside help to deal with all that was taking place.

Once I got my head around all the issues I simply moved forward a day at a time.
By mid July 2018 I knew I was dealing with ET JAK 2+ and MF with AXSL1 Mutation.

I have concentrated on getting advice from Experts and that process is still ongoing!
I cannot change any of it, but I have learned to live with it.
The pain does get to me at times, but there is a wealth of Imformation and Help Out There..
You have made the first move by joining Mates and if I lived nearer, I would love to attend the Cafe Catchup talking with others often helps.

I sincerely hope you get matters sorted, and you get this Extreme Pain under Control.

I hope Wednesday is good to you and you have had a restful night..

Best Wishes
Maria

[Warwick]

Dear Maria and other members

I am 47 I was diagnosed with ET in 2003 when I was 31. I had a blood clot in my leg when I was 27 migraines at 29 and a Dvt after a football soccer injury operation on my Achilles tendon. Even after a stint at Hornsby Hospital I was sent home with a box of Clexane injections and my Dvt explained as just bad luck I was the 1 percent that gets a Dvt after surgery.

My luck changed when a guy in my cricket team, Doc Bennetts said to me Warwick you are too fit for blood clots and I made an appointment to see him. He did the blood tests saw that my platelets were way too high and referred me to Dr McKinley heamotoligist at Castle Hill. I have never seen anyone else since, he seems to do everything Rueben Messa does so I am confident with his skills. Back then there was absolutely no understanding of what caused caused MPNs and it was not until after 2005 when they mapped the Human Genome and discovered the jak2 mutation that I was tested for the jak2 in 2007 and was positive. I went on to intaferon in 2008 however this did not agree with me i was convinced the world would be a much better place without me. I was gobsmacked when the heamotoligist told me later that suicidal thoughts were a side effect. Shortly after that I was diagnosed with polycythaemia. I have been on 4 hydroxurea tablets a day since then and I've been struggling with skin cancers have had two chunks taken out of my ear, an scc out of my eyelid and every 3 months I have about 50 sun spots burnt off my face and hands. In February this year I started getting the bone pains and my haematologist was pretty sure I was heading towards myelofibrosis and this was confirmed in the bone marrow biopsy. I have just started taking jakavi but after my stint in hospital last week my platelets have spiked again so I am also taking hydrea and the low dose aspirin which has cured my migraines I am a bit worried I am being overdosed and will become even more anaemic. The jakavi is working really well as my spleen has reduced in size by about 1/2 in 2 weeks. I am often described by my mates as being the world's slowest eater so hopefully my ability to eat will get better.

I still lead an active life playing soccer, squash and have been lucky that me bone pain has generally been happening at night and as debilitating as it is at the time once it clears I am fit as a fiddle again. Well that's not exactly true but you know what I mean.

I used to get really bad rosacea on my face but have discovered this honey cream only sold in Mudgee. It is so good that the plastic surgeon who cut the scc out of my eyelid thought it was a miracle cream.

I will have to think about the work situation cause it's likely that in the not to distant future things will get worse.

Anyway that's my story so far so don't feel too sorry for me cause I am going alright I have some great mates a beautiful wife and 3 great kids and am looking forward to meeting some new friends on Sunday.
Regards

Warwick

[MPN-MATE Admin]

Hey Warwick...

Evening, I too am really looking forward to our discussions come Sunday. You and I share a few symptom burdens, although, thankfully mine are not so severe that I have been hospitalised, (as yet...)

I am Post ET/MF, CALR+ Type2, and ASXL1 (HR) mutation. Presently, I am on Jakafi 25mg b/d, plus low dose aspirin. However, while the Jakafi used to keep my platelets largely at bay, these days they are back in the 900s again, and have stubbornly remained there for some months...

Recently, I have also learned that I am either Type 1 or 2 Von Willebrands Syndrome, which means that the protein that helps to coagulate my bloods is less present in my system, and their may well be other ramifications that might need to be considered. I will know more once I have attended my next Specialist consultation etc.

However, what you have revealed about your med's has me a tad concerned, (as you may now possibly be aware), that HU has been known to cause a variety of skin conditions; particularly non melanoma skin cancers, mouth & leg ulcers, and to make it all worse – Jakafi is thought to exacerbate them too...

Naturally, I too am concerned by these findings from peer-reviewed scientific articles, and I recently sent copies of them to Katie for her next consultation because she too suffers from a nasty leg ulcer that simply refuses to heal of its own volition etc. According to said articles, leg ulcers will not heal until there is a complete cessation of HU...

I was talking with Garry, (who you'll meet on Sunday), earlier this afternoon concerning how you are still managing to be at work etc...

Frankly, I don't know how you do it? I am sure that I could not. Some time back now I was really ill with bleeding internally, and the mental fugue caused by the HU just aggravated and made things much worse. After some time, they also tried Interferon Alpha, and I too suffered with depression like never before...

My BMB came back as pre-fibrotic Myelofibrosis, Grade2 level of scarring and since that time I haver been on Jakafi. It also reduced my spleen although, I still do not eat that much as there is always still a little discomfort. The biggest change however was feeling like my mental acuity had almost returned to normal... Slowly, my energy reserves began to pick up again, and eventually, I started cycling etc... My anaemia and fatigue is alwas ever-present, but I just teach myself to push through as much as I can...

I too have had at least two (2) TIAs, (minor brain strokes), that I know of, and the last one was quite interesting, to say the least... We shall have to compare notes on Sunday buddy...

Night Warwick

Best

Steve

[Lady in Red 01]

Hi Warwick,
That is quite some history there, I didn't realise that you have lived with MPN for
16 years until I saw your acceptance to the Cafe Catchup.

You are way ahead of me in the duration aspect.

I have sympathy for your Migraines, I have suffered them from childhood.
Squamous Cell Carcinoma (SCC) was bad luck indeed.
As Steve has referenced HU is known to cause Skin Ulcers along with other issues.

I take 1 Gram of HU daily and at the hint of Skin Issues I personally would stop taking it.

I'm a little further along with my MF and I am seeking a change of Medication.
I see Professor Claire Harrison at Guys Hospital, London which is where I should have been on Monday.

However I have Bronchitis at present and had to Cancel my precious appointment.
I will now see the Professor in November.

She is an expert on MPN's and possibly my only hope just now of obtaining a better Drug than HU...

My local Haematologist is happy to keep me on HU at present..

This is a classic case of Research and knowing what these Drugs do to us..
I have had help with this issue and that's the beauty of chatting with others in the same boat..

I am a RN Surgical was my specialty, this MPN I had Zero knowledge of same as many of my colleagues..

As you said there is actually so little known about MPN's, but all the Research that takes place is an asset for all of us..

Enjoy the Cafe Catchup Sunday I'm sure it will be good...

All the Best to You
Maria.

[ericjohnson1135]

Exercise is the establishment of chronic back pain treatment. It's one of the principal medications you should attempt under the direction of your doctor and physical advisor. In any case, a similar arrangement of activities doesn't work for everybody. The activities must be custom fitted to your particular side effects and condition. Keeping up the activity routine at home is likewise a major part of progress.

Physical treatment for constant back torment may include:

Retraining your posture.
Testing the limits of agony resilience.
Extending and adaptability work out.
Aerobic Excercise.

Hope this excercises will help you to relief the back pain

[KatieB]

Hello Katie,
How nice to hear from you, although I am rather sorry to hear of your Ulcer on the Ankle.
With good care and time it will heal, but as you say not easy whilst still taking HU.
Yes it does bring to mind the " Hole in the Bucket Song" same applies to me on occasion..

You must certainly be up for a challenge very brave to emigrate to Australia, but sensible to be with your family.
Where do you originate from in the UK ?
I live in Weston super Mare, Somerset.

However I am Welsh from just outside of Cardiff, Weston has been my home for a long time and where I raised my family, my husband is a local..

How interesting that you have done Yoga for many years, it is something I intend to give it a go along with some other items on that list.
I never had the time before, I put my career and family first.
Nursing gives you plenty to think about, my final 16 years were on Night Duty only..

I Retired and thought, " this is my time, our time" last year in the March I was diagnosed with ET by May I knew I also have MF with the AXSL1 MUTATION...

Yes it would be so easy to give in to our MPN, but I'm not that way inclined...
2018 was swallowed up with various appointments and adjusting to my situation.

This year we planned on getting off to warm climes for a month but fate had other things in mind for us...

I seem jinxed at present, I was due to see Professor Harrison at Guys on the 23rd September, I came down with Bronchitis 9 days ago, thus had to reluctantly Cancel with the Professor..
This was the opportunity to see if she will change my therapy from HU to Ruxolitinib.
But Ruxolitinib is exspensive treatment and the Powers that Be are reluctant to prescribe it...
I do have entitlement as I have MF, I suspect they hope to wait until I'm a lot sicker with it.
So yes I also have the Bucket with a Hole in it, so frustrating!
Happily I have another appointment with the good Professor in November.
She is very nice and informative obviously I will remain hopeful..
It's the Bronchitis which has aggravated the lower Back Pain I suffer bouts of, all the dreadful Coughing, I'm rather tired of hearing myself..
I don't normally have Bronchitis yearly, but this is the second time in succession, same last year quite soon after having my Flu Vac in October..
This years Flu Jab was done earlier September as the Doctors are anticipating shortages and All the Who Haa with Brexit has got the Physicians worried about Drugs if we leave the EU without a Deal.
I personally have become very bored with it all, but I do fear for certain issues such as Drug Therapy..

Thus I don't think I will have the Flu Vac in future, it's all rather a lot for our bodies to Process especially with HU 1 Gram Daily on board..

It's 7pm with you, have you had a nice day, you are about to have Summer, as we approach Winter here..
Our days are growing shorter and the Clocks will spring forward shortly, I always think that once Christmas is over I am looking forward to the Spring once again..

So nice to hear from you and I look forward to another chat with you.
I think we briefly chatted on MPN Voice, I have met (in the virtual sense) some nice folk on there and converse with in far flung places New Zealand, a splendid fellow in USA, not forgetting Steve who decided to set Voice up for the Australian Audience!
Along with a few other nice people in various locations in the UK..

I wish you a pleasant evening and a beautiful tomorrow..

Take Care Katie and All the Best to You.
Maria

[KatieB]

Hey Maria,
Thank you so much for your message. I am sorry it has taken so long for me to reply,
In answer to your question about where I lived in the UK. On the borders of Staffordshire and Shropshire in s little village called Loggerheads ( would you believe!)
I came to live here in Australia as you know already but I love it and feel that at my age, if I am going to get stuck one end of the world or the other, it is better to be here.
I was unable to return to the UK this year due to a high platelet count. So disappointed about that,
I changed from HU to Anagrelide due to a nasty leg ulcer but it just did not work for me. I am now on Busulfan as a temporary measure to try and bring my platelets down.
I am of course much older than most of you at 79 in April. I still feel young at heart and certainly don’t want to give up the ghost yet! This year has been s difficult one though.
I do admire your tenacity and your willingness to try to help other people with MPN’s. After all, we are quite an elite group.
Steve is great and has helped tremendously by setting up MPN/mates here in Australia. A forum was so badly needed.
I do hope your bone pain has subsided s little and you are feeling better.
I was very sorry to hear Warwick’s story and have tried to phone him but had no luck.
I feel lucky when I read how much some people suffer.

All best wishes to you and please keep posting,
Katie