At my wit's end with no energy, leg and other pain, dreadful gastric reflux because I took brufen to try and reduce leg pain. Have MF and hoped for say 5 years of enjoyable life but all I think about is when I can take next lot of pain killers, which are only modestly effective. Dire.
My haem is always running hours late, and doesn't really think it's "his" problem. My GP gives me a another lot of omeprezole (been on it 3 month and no better) and more pain killers (rationed).
Have private appointment with haem Monday to see if I can get anything improved, but seems to me everyone is operating in their own little boxes. No-one seems to know what to do, so I assume I have to put up with it. Perhaps I should try anti-depressants?
Seem to be lots of us in similar situations, but no help available.
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jane13
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My heart goes out to you. I am so sorry to hear you are dealing with such pain and not getting the care you need to ease it. Perhaps you could ask for a referral to a pain management clinic/team- their sole purpose is to help ease pain in a whole range of ways until they find something that works for you. It ks hard to fight for anything when you are living in pain.
I was referred to pain management team, after 14 surgeries had left me with terrible pain and the team were fantastic. They are EXPERTS in pain. You DO NOT and should not have to put up with it, pain relief is a human right. And I know that living with severe pain can sap the life out of you until you think you are going mad, but you are not, you are suffering and that is a hard place to be.
Perhaps others here have recommendations or Maz may know of other possible avenues to pursue. I am sorry I can't be of more help except to say you are in my thoughts and hope the pain eases.
Wishing you relief
Susieq
(One small thing that brought me some relief was Lidocaine Gel rubbed into the area where I had pain...but may be useless for you..)
Although I don’t have any answers - I do know that NOBODY should have to endure such pain. It’s a bit disconcerting that your haem doesn’t think it’s ‘his problem’ since it’s undoubtedly related to your MF. I’m presuming that you’re just seeing a haematologist and wonder if you could ask to be referred to an MPN Specialist?
There maybe something in susieq75 advice regarding pain management - might be worth considering. Also Maz or others more knowledgeable in MF might be able to offer more guidance.
I’m so sorry to read this Jane. I would definitely be asking for a 2nd opinion at the very least, and like the others have said, you shouldn’t have to cope with such pain.
Hi. Sorry you are experiencing so much pain and distress. I’m with the seeking a second opinion lobby. Your haem should definitely be taking an interest in this and trying to provide some resolution - even if that means referring you on to another specialist service, perhaps as part of your local cancer support services.
Perhaps Maz might be able to provide you with the name of MPN specialists in your area. And ones who are known to be responsive to their patients needs.
Jane, I’m so sorry to hear how much pain you’re in. I too have MF and cannot imagine having to put up with what you are dealing with. It doesn’t feel right that you have had to organise a private appointment.
I hope you have a better day today. Thinking of you
So feel for you Jane it's no wonder you feel low. I've had MF for 9 years luckily so far with a good quality of life. There is a lot going on in treatments for MPN's you just never know what may turn up for us!!! I wouldn't even think of 5 years of life we just don't know. My jakavi is no longer working unfortunately but so far life is still reasonably good. I do feel you need your haem to listen and act asap for you. I hope you have someone with you when you go and write down all the ailments you have - you are entitled to answers and help. If your problems get sorted it will give you hope for the future at the moment it's a battlefield. I'm attending one of the wonderful forums in Dublin would be good if there was one near you?? Take care it's not an easy road that's for sure.
I feel for you Jane. Having been to almost every “ologist” you can think of over the past few months I wholeheartedly agree about them all operating in their own little boxes! I feel that generally the haematologists are the most well rounded and when I mentioned exactly this to my haematologist he said he thought it was possibly because they are consulted on a variety of conditions other than haematology issues.
I hope your private visit will help give you some answers to relieve your anxiety.
Hi guys and thanks for all the replies, feel better already.
I live in rural Wales and go to the nearest specialist centre at Swansea rather than the local DGH. Swansea are just too busy - last time they were running 3 hrs late for outpatients and you just don't feel you can take another 30 mins do you? That's why I have gone for a private appt, with an MPN specialist.
After that will see what next! But the pain team sounds like a good idea - they are usually anaesthetists so hopefully will be able to take a big picture view - and will try the liquorice.
Hi jane, sorry to hear you are in lots of pain and the travel to swansea with all the waiting around can't be very helpful. have you tried to have a referal to Steve Knapper he's based in cardiff, i know its even further to travel, but he is a specialist in MPN and a really nice Dr. he has attended our forums and is happy to have a referral. i managed to get one and i have my treatments at withybush.
Hey that's really interesting. Saw Steve K before re drug trials - good guy - how did u arrange to have treatments at Withybush - are you "under" SK or do u see him occasionally as a second opinion? I had a bit of a falling out with the haem at Withybush (my take: he didn't like being challenged /questioned) so not keen to go back there - and he will probably not be keen to have me - but starting to think about what happens next in MF, which probably involves transfusions, and getting to Swansea then becomes a serious logistical manoeuvre! Please tell me more?
I have ET and I see Dr Grubb who I find, shall we say difficult to have a conversation with, he has no awareness of any issues regarding symptoms of any MPNs and really not willing to listen. I had a second opinion with SK and he gave me his secretarys number and his email address, so if I have any questions I can email him and although I have only done this a couple of times he has been really helpful. Especially when I changed my GP he sent them info regarding symptoms of ET, fatigue, bone pain, night sweats etc. Maybe worth you having a second opinion with him. Let me know if you do.
Hi Jane, sending you a load of E hugs as you sound like you need them. I agree with the seeking of a second opinion- can do no harm to do this. Same with pain clinics.
Gastric reflux is horrible. Have you tried peppermint oil as well as omeprazole? May help
Take care, hope you feel a bit better soon. Kindest regards Aimexx😺😺
A pain clinic may be your best option to control the pain, no one should have to be in pain when options are available.
As for the reflux, I also have that problem and have found that elevating the head of the bed by 6-8 inches is really helpful. I purchased bed risers and the head of my bed is now 8 inches higher than the foot of the bed, helps me tremendously. I also purchased a reflux wedge pillow that is 8 inches higher at head. If you purchase one of these pillows just be sure it is wide enough and long enough, the smaller ones are hard to stay on.
Hi Jane, just a thought for you. I travel 3 and a half hours to see my MPN specialist but get blood transfusions at my local hospital. I've been doing this for a long time and it works really well. The point being if you travelled to Cardiff you could request the same thing which would be just the one long journey now and again. I get on really well with both haems and feel really lucky ti have this care. It's so important to be able to build up a rapport and have confidence in your care. So hope you get your ailments resolved it's enough coping with MF!!!!!
You really seem to be suffering. I had terrific reflux problems in the early days of diagnosed ET (although I believe I already had MF).
The usual rounds of Omeprazole and Gaviscon Advance helped but a couple of episodes of choking because the reflux closed my throat and stopped me breathing for nearly a minute during sleep persuaded me to get something done.
I had a hiatus hernia repair and fundoplication keyhole operation all done in a day and this has largely cured the problem although I occasionally take an Omeprazole tablet to help with indigestion.
Perhaps this is a route you could explore with your GP.
Hello jane, I hope you are soon feeling a little better and get the help that you need quickly. .I just wanted to agree with gbeam that Cardiff has a really good Haematoloy Unit as l have been told , Dr Knapper has given talks at the London Forums on MF , Bye Gill
It looks to me that PV is the poor relation. I too have a lot of pain in my legs but no one seems to take itseriously, almost as if I It making it up. Some people who should know betterc cannot decide whetherit is a cancer or not. Anyone who has the pain isn't
On the subject of ' cancer or not, i'd heard about a place which was mainly to support cancer patient,but also wecomed PV patients too. I couldn't find more online so rang Macmillan and was [ut through to a nurse who was horrible. She was very dismissive, and finished up by saying that a woman with breast cancer wouldn't be interested in interacting with me.
I'm a big girl now but felt so upset and bullied and wondered wy. Has anyone else had a similar experience, In fact I've had full on cancer, and been very lucky to be alive, and I'm certain that I'd never treat anyone looking for help like that.
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