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Hep C Discussion Forum -> Living With Hep C -> My bones and joint pain unbearable I'm so fed up
Post Info TOPIC: My bones and joint pain unbearable I'm so fed up
Jaggles


Senior Member

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RE: My bones and joint pain unbearable I'm so fed up
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Thanks C great to be back here. I have been busy back at work now but often come on and have a read, absorb all the wise words on here and accesss information. It's a lot more than I get from GP. I agree, she could have been a little more helpful but she makes me feel like I'm taking up her valuable time again and there is nothing she can do. Health services here are now at crisis... my daughter is a nurse who wnats to quit because the NHS is not what it used to be. So , for people like us who wait and wait it can be dismal time as you know only too well. Keeping my sense of humour helps to a point...then I collapse an emotional wreck. I was on HRT for a while as like you, all. Misdiagnosed as menopausal symptoms. I loved the HRT , felt good and now know it was masking this . Anyway, as wonderful as hind sight is..its the here and now that matters. I'm continuing to call the consultants secretary leaving progress messages for the Hep Nurge and keeping methodical with my diet, workload, pace, sleep and taking supplements like, magnesium and sage. I took my first painkiller last night since diagnosis ..held it out as long as I could but muscle tension etc was causing migraine and jaw pain . Little better today. I've also written, and had in short, a response, to my local mp who has written to NHS. Also I wrote to mr Hunt, health secretary to nudge him about committing to eradicating HEP C,....Australia have at least announced their commitment.

anyway, I will keep going and fighting this.....thanks again C my virtual friend. My other half, by the way is fantastic....he is so supportive. It is a lonely disease because so difficult ....I work in the community with girls who have been abused....so its tough. I'm proud to say I saved a girl from jumping in the river the other day....I spent a lot of time talking about the gift of life.......my job is good for me....anyways...must go put some make up on and get on with the day

 

hugs and many thanks J xx



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 56

fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 
Canuck


Guru

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Posts: 3249
Date:
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Hey Jaggles, 

So good to see a post from you again (I will have to have a better look at your labs over in your other post), but sorry to hear about how tough the going is. I am glad Observer caught up to you first here - she is right on!!, just when you could do with a little help and a hand, to have something to "hang on to" like some advice, some solace - SOMETHING!! - while you are waiting, you get hit with stuff like that from your family doc - totally unfair/uncalled for, un-helpful!!

I know the waiting, and that your discomfort is wearing. Just keep hanging in there - it will flucuate up and down a bit. Your interim job (unfortunately) is to wait, keep presenting yourself, as is required - DO NOT ever let them discourage you from doing so. If you have to re-present yourself to them as the only adult in the room, as often as it takes, do so - do not let their bad behaviour on one particular day leave a bad taste in your mouth, or dissaude you from asking for their continuing advice and support. Sometimes, it seems, that that is our job too!!, to remind them, that we are just very nice people in a hard place, the ones requiring justifiable assistance, to which they should know to be kindly attentive to!!

In retrospect, because I did not know I had HCV, I had (for years) associated a lot of my joint/bodily pains/discomforts with menopausal symptoms, aging or other things. Getting on HRT and being on HRT did seem to help, and, I am still convinced my HRT therapy did have some good effect (for me anyway). But, it is hard to say for sure one way or another. 

Did they OK anything that you could take by mouth, for pain, should it be the right thing to do? 

Can you try some things, like heat applications, hot tubs, massages? Maybe worth some tries? Even brief respites are good. It is also nice to have a significant other to take things out on (or with) or to glean some support from, they seem to come in very handy that way, sometimes in suprizing ways, when you may least expect it too. They sometimes turn out way more durable than we give them credit for, and sometimes we find we too are waay more durable than we ever though we would ever have to be. RC and some of the others around here taught me about reaching for the boot straps and having to pull myself up, a few times. This is hard work, I wish it wasn't so.

Hang in there, you WILL get there. C.

 

 



__________________

HCV/HBV 1973. HBV resolved. HCV undiagnosed to 2015. 64 y.o. F. Canada.

GT3a, Fibroscan F3/12 kPa - F4/12.6 kPa, VL log 7.01 (10,182,417), steatosis, high iron load.

SOF/VEL with/without GS-9857 trial - NCT02639338.

SOT March 10 - EOT May 5, 2016 - SOF/VEL/VOX 8 week trial.

 

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Jaggles


Senior Member

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Posts: 145
Date:
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Thanks Alison...I needed that....its kind of been creeping up and setting in more and more. Ive had this for a while but all tests prior to HCV never gave a conclusive diagnosis. Noe I have HEP C all the doctors do is put everything down to that....I'm in agreement that most it will subside after treatment...if successful ....I just have been feeling invisible...is the only way to describe it....only people on here know what I mean. Big hugs for empathising...I a, grateful. I'm now consumed with me day of work and hurricane Doris is rattling around my house lol....I may wake at 5am again so thanks for listening to rant. My poor partner gets it all otherwise...the pain is now ...on my lunch break.....travelling round my neck and going down my back, in fingers, bum cheeks....strangely are badly affected. Peripheral neuropathy is not something anyone has mentioned before...so thanks... im gonna look it up. I am learning quick that Gp's know little around the subject of Hep c virus. But the consultants who do and their time is as rare as Russian diamonds ...

Anyway, thanks again and bless you 

 



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 56

fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 
Observer


Guru

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Posts: 714
Date:
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So sorry to hear that your suffering is so intense. I certainly can relate to the high levels of pain that go with the nasty virus.

It almost sounds like you may be having periphial neuropathy in your toes and fingers ... the burning pain of that is indescribable, coupled with the arthritis that many of us endure, its very hard to cope. I'm super sad for you that your medical system isn't hurrying your treatment.

If I can make a suggestion, when I have been expected to wait unfathomable times to see a specialist, I always make super nice with the specialist's nurse, tell her I'm suffering horribly and ask if she could please, please, please put me on a cancelation list. It has worked more often than not. The specialists know how horrid this virus is and how the symptoms escalate.

I can't believe your family Dr snapped at you! Poor you, you certainly don't deserve or need that!  If my Dr snapped at me when I asked for help, I probably would have burst into tears....She is right, those things will lessen or go away after treatment but what about helping you with now? Grrrrr

Never feel bad about ranting here, we all get it. You are an amazing strong person and you get to have a new grand baby! I only get grand doggies. 

Alison

 

 



__________________

61 y/o, Infected via transfusion Oct'83, GT-1a, F-4 cirrhotic,
tx Holkira pak/moderiba 12 weeks

4 years.... successful dragon slayer 
Jaggles


Senior Member

Status: Offline
Posts: 145
Date:
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is it normal to feel like this? I'm so fed up with the daily groaning of pain in my joints and bones now. Burning splints in some finger and toe bones, so bad this morning (it's now 6am) don't know how I'm gonna get through today. Lately it's been moving around ...it hurts everywhere like, my feet crack, my hands and fingers, my hips, my knees went on me the other day. I normally recover from it and get on but this past few days I'm teary, tired, in pain and brain fogged...so depressed. I went to my GP two weeks ago to get advice but she snapped at me and  ' we are not going to test you for anything right now as all this may go once you are treated for HCV. i called the Hep consultant secretary yesterday to see if my doctor has written to them as they need to know how my virus is progressing and I'm not due to see him until,July 4th....she said they would get back to me. No one seems to understand how bad this is getting or they almost imply I'm trying to jump the bloody que ....I feel desperate depressed and almost done with living but I'm too stubborn to quit !!! I feel so alone as on the outside, with enough make up, I look fine but inside I'm screaming. Even those close to me don't really know the pain I'm in. I have a granddaughter due in June and my other daughter gets married in March....how the hell am I going to cope with it all and such special , or should be special times ........sorry to dump on you all but living with it is getting really hard and I don't know how much longer I can cope without going berserk.

 



__________________

HBV 1982 Resolved  / HCV Undiagnosed until Sept 2016

female U.K. AGE 56

fibro score 6.9 

Viral load 3.5 million October 2016 

Geno 3

Treatment Epclusa

Undetected at 2, 4, 8 and 12 EOT , SVR 12 / 24

October 2016 Alt levels 190 now, July 2017 17

 
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