Pain and fatigue

[poly2]

Hi all. I am looking for some advice please. Has anyone out there had to take early retirement due to mpn. I am 59 and have pv jak 2 positive. I am really suffering with joint pains and fatigue. Consultant says joint and back pain is not down to mpn and tells me to see Gp. I am taking hydroxycarbamide and apixaban blood thinner due to portal vein thrombosis. I am worn out with being pushed backwards and forwards from haematologist to GP. I am at a point where i feel i need to finish work due to the pain and fatigue. Has anyone else been in this situation and managed to claim any benefits. Thanks.

[Kari1961]

Hi poly2 . Sorry to hear that you are going through such a rough time.

I would definitely do as advised and get your back and joint pain checked out further. I often think I see more of my GP and haem than I do my own family - sometimes it feels like I'm always making appointments to see them.

I've been self-employed since 2013, I've found that it works well for me as I can manage my own work schedule and work load.

I do get PIP (Personal Independence Payment) I get the daily living element. But, it's not due to the fact that I have PV or its symptoms. I get it due to the lasting disabilities from a stroke I had in 2012. I have a weak, numb right leg, balance problems and an Essential Tremor.

You hear so many horror stories about claiming PIP, but I found the process quite painless. I thought my claim would be rejected, it wasn't. So you could always put in a claim. When I claimed it I had to supply letters and appointment letters from my GP, Stroke doctor and consultant - I wasn't going to bother, but then my daughters persuaded me to, and I'm obviously pleased I did.

Kari.

[Superwoman in reply to Kari1961]

Hi Kari I would agree with you about PIP its the way to go, but my Daughter who also has a rare cancer Parosteal Osteosarcoma and had her thigh bone removed and replaced with Titanium then for it to go to her lungs which is very rare for this to happen but it has, she also got made redundant from her job last year when this all happened due to covid and and she has been unable to work since, she applied for PIP, sick benefit, unemployment benefit the lot even Macmillan could not help, she has over twenty years full contributions but they picked the one year when she was pregnant with her second child and also got made redundant but got a new job very quickly, where they claim not enough stamp had been paid, but her records show she had, but they will not budge, which is sad she has appealed twice but still they will not help her, so yes you do have to pursue them but it is the way to go if you are entitled to claim, every little helps.Jean

[Kari1961 in reply to Superwoman]

That's shocking Superwoman - especially as PIP isn't a 'means tested' benefit. So NI contributions shouldn't have been a factor. I got it and I work. I had help from the Citizens Advice Bureau - they helped me fill out the forms and also looked at the 'evidence' I had. I found their advice really useful.

[Superwoman in reply to Kari1961]

Yes she has been down that route with. Citizens advice, had a nurse from PIP call her today of all things, went through everything offered her a blue badge for parking in a disabled spot which made her feel worse as she just wants to get on with life as best she can with two children. I know its a minimal amount of money but every little helps. So we can only hope.All the stress at the moment is not doing me any favours and this heat boy used to love it but not any more 🥵 maybe for me its an age thing🤪.

Take care

Jean

[Kari1961 in reply to Superwoman]

I agree with Whitehair51 . The Advice Now website has some links where you can find local legal help from the Law Centre advicenow.org.uk/guides/how... I originally made a claim for the mobility element of PIP as getting out and about is a problem for me. That part of my claim was rejected, and instead I received the standard daily living element. As you say it's a minimal amount of money, but also enables you to easily obtain other help. Before PIP I wasn't entitled to Housing Benefit, now I am.

[Whitehair51 in reply to Superwoman]

Get a lawyer!

[friendofpiglet]

This link might be useful.

moneyhelper.org.uk/en/pensi...

[poly2]

Thanks for the replies. I only work part time now as I have reduced my hours and also changed my job role with less responsibility but still find I'm exhausted when i get home and have to have a nap. My quality of life is practically nil. I applied for pip a couple of years ago but was turned down. I may just go down the early retirement route and take my private pension early as i just haven't got it in me to fight. I will be having a meeting with occupational health in the next few weeks as i am currently off work with a sick note. Will let you know how it goes.Take care all and thanks again.

[hunter5582]

There are several issues here to address. Hopefully others can advise you on obtaining disability payments if you need that.

I would suggest that it is time to consult with a MPN Specialist for a second opinion. MPNs are at the core inflammatory disorders. Dysregulation of the JAK-STAT pathway causes many inflammation related symptoms. Treating for systemic inflammation is an important part of managing MPN symptoms.

Regrading the fatigue, it would be advisable to get to the bottom of what is driving it. PV can cause fatigue. The iron deficiency that is part of PV treatment can cause fatigue. Fatigue (asthenia) is also one of the common side effects of hydroxycarbamide. It can be difficult to figure this out, but one clue is when did the fatigue begin. Unfortunately, some docs are unwilling/unable to help sort this out. This is part of why it is so important to find a MPN Specialist with the KSAs to help. Here is a link just in case you have not seen it.

mpnforum.com/list-hem./

There are things you can do to help with the fatigue. Here is one resource from out friends at MPN Voice.

mpnvoice.org.uk/living-with...

All of the best to you.

[poly2 in reply to hunter5582]

Thank you so much for the replies. I have discussed with hubby regarding going to see a private consultant. I think my nearest one is Nottingham so not too far away. Gp can only prescribe painkillers because she won't give me anti inflammitorys due to the blood thinner. Haemotoligist won't change the hydroxycarbamide because interferon would make the fatigue and side effects worse and they haven't the funding for any other drug. Gp has now suggested physio so i will try that but had it before to no avail. I do go for a little walk twice a day and hubby does all the cooking. Lucky me!! And helps with the housework. I may also try swimming to see if that helps. Once again thanks for the invaluable support.

[Pte82]

poly2, hydroxycarbamide causes magnesium loss as does pain and stress and may be sufficient to decrease thiamine activation needed for ATP creation for energy and the vagus nerve's function. Magnesium also prevents platelets from sticking together. Research magnesium forms and the amount appropriate for your weight. A good soak with Epsom salts (magnesium sulfate) and a little baking soda may give you some needed relief. Boron can increase magnesium absorption and may deal with joint pain. Check out "nothing boring about boron". Always consult with your health care professional before using any supplement.

[hunter5582]

Physio is certainly worth considering. I did not include that I also practice Qigong. This is also very helpful at a number of levels.

I would be sure to consult with someone other than a GP regarding supplements or other complimentary health interventions. Most docs are not familiar with these interventions and how they interact with Western medicines. Practicing defensive medicine sometimes means docs say "NO" to something that could really help without causing problems because they simply do not know. This is why I consult with an Integrative Medicine specialist. My very wonderful GP flat out told me he did not know and referred me. FYI - some risks are worth taking. Living in chronic unremitting pain is also not acceptable. Doing nothing has risks too.

Regarding HU vs PEG - I would note we are each different. I experienced significant toxicity on HU even at very low doses. So far, I have had no adverse effects from PEG at 45mcg. Not everyone reacts that way, but if you find that HU is casing problems, know hat there are other options. Do be sure to consult with a MPN Specialist about these two choices as well as the other treatment options. NOTE: you do sometimes have to appeal to access the more expensive options if that is what you need. Know that it is worth the time and effort if you need to pursue this route. Your quality of life is worth it and so are you.

All the best.

[poly2]

Thank you all so much for the support. I will certainly be looking at any options to get through this. My husband is 67 and in a much better condition than me. He has to slow down and wait for me to catch up. Once again thank you all. On a Last note. Does anyone know what happened to the article that should have been in the mail on Sunday from Jill. I was looking forward to reading it. Take care all

[FXT1966]

Try universal credit .You should be put in support group where due to PV you dont have to look for work. Fatigue due to PV is reason to finish work. Must have less than 16 k in savings. Claim council tax reduction. I finished 2 yrs ago age 58

[Bears23]

I had similar experience. Was treated by a spine doctor that eventually referred me to a rheumatologist. The rheumatologist diagnosed me with an auto inflammatory disease, unrelated to MPN. I would just get checked out by both, always better to catch it early. Best of luck.

[Teejay906]

I'm also PV JAK 2+, 58. Diagnosed in April and just starting to have significant joint pain. Especially my feet/ankles. At times move slower than my dad did with Parkinson's! Epson salt soaks help as well as hydration suppliments. It seems counterintuitive but walking daily seems to keep both fatigue & pain at acceptable levels. I've been working from home for over a year and go back to "office" in August. We'll see how I'll cope with full days. Hope you find good health support.

[poly2]

Thank you all for the advice. I have taken note of all your suggestions. Just finding it hard to understand why haemotoligist doesn't recognise the joint pain with the mpn when there is a lot of people on this site with the same issues. I will certainly be looking to see an mpn specialist soon. Once again thank you all. Take care.

[Bobadog]

Hi polyI had severe back pain (low lumbar) when initially diagnosed with PV(Jak 2 +ve),and my Haematocrit was 69.

It was far worse than my usual ‘lumbar disc issue’that causes intermittent pain.

Whe the HC levels increase ,and my venesection is due,the lumbar pain often increases due to MPN related inflammatory reactions?

But as the other folk here suggest ,it’s well worth getting an independent orthopaedic/rheumatologist opinion too.

I manage the pain now with core exercises and Pilates etc,which has made a most significant difference .

Swimming can help,depending on your action in the water,

Best wishes to you,

[poly2 in reply to Bobadog]

Thanks for the advice. Appointment for physio is not until sep. Painkillers not doing a lot other than making me sleepy. Gp won't refer me back to musculoskeletal until I've tried physio. normally when i need a venesection the pain is worse but my bloods were fine. I'm So frustrated. I'm hoping to get myself together so i can find the energy to start swimming. I'm going for two walks a day and drinking plenty of water. Take care and thanks.

[Bobadog]

Do try Pilates if you can find a good teacherIt really helped my back pain.

I’m a physio ,but just concentrating on core stability and (gentle)general muscle strengthening has really helped.

[poly2 in reply to Bobadog]

Thanks i will have a look at that. As you're a physio. Can i just ask if I'm wasting my time with the physiotherapy. The appointment is only via telephone consultation. I've been diagnosed a couple of years ago with a bulging disc and osteoarthritis.

[Bobadog]

I do think it’s well worth having a chat with the physio.But maybe an individual Pilate session to get you started ,would be beneficial too.

All the very best..

[poly2 in reply to Bobadog]

I will take a look at that thank you. Take care

[Wyebird]

Hi, I retired age 57 and was diagnosed 3 years later. I definitely could not have carried on working with my MPN. Even now I have to pay for home help.

[Borage]

I was retired at 56. I am not entitled to any state benefits and I am still waiting for my state pension since it was moved from age 60 to 66. I have a small NHS pension. My employers added the maximum 4 years extra pension contributions to allow my NHS pension to start. I am designated as unfit for any employment.

I was diagnosed with had ET JAK2 pos, aged 52, after several years of having high platelets noted but not investigated. I was started on Hydroxycarbamide and aspirin immediately.

I suffered with frequent angina, diagnosed as Cardiac Syndrome X or microvascular angina, a vague unsatisfactory diagnosis. I think it is related to E.T. as dehydration on busy shifts at work would often cause an attack. Drinking about a litre of water helps relieve the feeling of pressure on the neck and chest and the pain

I had back pain and a limp folllowing several episodes of disc prolapse. I kept walking into walls and door posts on my left if I wasn’t concentrating, because my back was twisted and bent. I had bladder issues from nerve damage and Midwives’s bladder. When I did my nurse training we were the patient lifting equipment. ( Pilates and Yoga have helped a lot.)

Numbness in my hands and feet meant that I dropped things and tripped over things.

I was utterly exhausted all of the time and found it hard to concentrate and focus on what needed to be done.

I had silent migraines, which left just peripheral vision, challenging if you are trying to read the small print on drug ampules.

The Hydroxy really upset my gut.

I became quite phobic about taking blood since I was diagnosed with E.T.

Probably, I have some mild degree of post traumatic stress as I still have the nightmares about staff shortages.