Helen H

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Viewing 15 posts - 1 through 15 (of 185 total)
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  • Helen H
    Participant

    Hi Emma,
    I can really relate both to feeling marginalized as a woman patient, and having pain with no definitive cause. I am 52, and have had chronic pain on and off for years, and constantly for the last 6. I still can’t believe that there is nothing on an xray, haven’t had an accident etc to explain it. I remember asking the consultant if I was a freak, and was really shocked when he said that chronic pain for no apparent ‘problem’ was not uncommon.

    I do hear what you say about not feeling heard, and wishing you could remove the parts of the body that are in pain. Unfortunately when you express this to Drs they will just presume you are depressed rather than reacting to intense pain. In my experience GP’s often don’t know that much about how to manage chronic pain.

    Re fainting etc, (if you have had everything else checked), it could be that you have a form of POTS , which i have. Essentially it is when your blood pressure drops suddenly and you faint unexpectedly. Dehydration,hunger, heat and stress can all exaserbate. It is usually managed with electrolytes and other measures.

    I am happy for Jan to give you my email, if you would like more info, as it is not really pain related.

    Best wishes
    Helen

    in reply to: Flare up in Chronic pain. Symptoms #47862
    Helen H
    Participant

    Hi Carolina,
    Firstly, I agree with all Lee’s great advice- he has helped me through more than one horrendous flare-up over the years! you are not alone- lots of the kind folk on here will be reading your post and sending a virtual hug.

    You are really going through the mill at the moment, and it feels never ending. Great that you are able to walk for a couple of minutes. It might be a help to do less than your maximum, say 4 mins instead of 7 mins walking, until things calm down. If you are constantly pushing your body doesn’t have time to heal. It’s a marathon not a sprint.

    Secondly- it’s not your fault, and your past or present level of activity does not define the future. It can take a while for things to settle down, which is really hard to get through.

    REST and do the minimum of everything. Even the gentlest activity can aggravate when you’re flared up.

    Take care,
    Helen

    in reply to: Flare up in Chronic pain. Symptoms #47843
    Helen H
    Participant

    Carolina- it’s the’ search forums’ box a little way down on the right, not ‘search site’ box at the top right. Hx

    in reply to: Flare up in Chronic pain. Symptoms #47837
    Helen H
    Participant

    Hi Carolina
    God to hear that you enjoy being creative,as many of us do😊

    If you go to the SEARCH FORUMS box on the right of the Forum, and type in ‘flare up’ you can find all the threads that discuss flare-ups.

    It has possibly been a bit quieter on here of late due to many of us having/ having had flare-ups, but you can always access the archive via searching.

    Take care
    Helen.

    in reply to: Flare up in Chronic pain. Symptoms #47834
    Helen H
    Participant

    Hi Carolina
    And welcome 😊

    I can totally relate: flare-ups are really hard to get through, and it can play havoc with your mental health wondering ‘ What did i do wrong?!’ It can feel very isolating, which is a good reason for finding this forum. We are all living with pain, and we understand how difficult it is for you right now we really do.

    I have had chronic pain throughout my body for the last 7 years, and my husband has lived with chronic head pain for much longer, so as far as flare-ups go, we have quite a lot of experience!

    The first thing to say is that I really admire how much you are doing to help yourself with pacing, breathing and Meditation. It has taken me years to do this, so you are doing brilliantly…even on the days when you don’t feel you are.

    It has been really helpful to have a plan in mind for how to get through- a routine that you can lean on on the worst times including some stuff you enjoy. For me planning the day 1 hour at a time is really helpful, as are journaling every morning, and doing some easy activities I enjoy- Podcasts, crafts, colouring, radio plays, whatever helps the time to pass. Keep doing as much breathing etc as you are able, but the most important thing is to treat yourself kindly and gently. Be as kind as you would be to another person who was suffering, and give yourself lots of TLC. You don’t need to plan or force your body out of a flare- up and things will improve faster with more rest and care.

    I hope Jan doesn’ t mind, but I wrote a Blog about Flare- Ups, which you might find useful: https://thechronicelephant.blogspot.com/2019/05/the-elephant-survival-guide-to-flare-up.html

    I hope any of this is useful,
    Take good care
    Helen

    in reply to: alternatives #47686
    Helen H
    Participant

    Hi Karl-
    I have ME, and chronic pain. I have tried CBD, and i tried the best quality i could afford. I gave it a good try, but it didn’t have any impact on pain. Meditating every day has had a much more significant effect for me, and was relatively inexpensive. I did the Self-paced online course for pain and illness,from Breathworks, and it was really good in helping me cope.

    I have tried a lot of medication, and I find Amitriptyline helps with sleep, and i use Tramadol, and paracetamols, as well as anti-depressants.I am physically quite limited in what i can do but the quality of my life is good. .
    Has your wife got referred to a pain clinic?

    It is hard to adapt, but having a routine is really important, as is finding things you can enjoy, like crafts, music, or Nature….and finding other people who share the same condition and understand what she is going through. I am sure there are other folk on here who have fybro.

    Take care
    Helen

    in reply to: chronic pain and nerve twitching #47668
    Helen H
    Participant

    Hi Kerry,
    Yes i have had much worse nerve pain lately, and like you, i have found even gentle stretching flares it up horribly. I think it is because of all the stress surrounding the covid- pandemic. I find that when 1’m anxious or worried then the pain rockets…and parts of my body that are usually not bad can flare up.

    Not sleeping well seems to be affecting a lot of people- i write as someone who has been awake since 3.45am! This intensifies the pain, and reduces the resources to cope….and is also a classic migraine trigger.

    I can’t give you medical advice, but as Lee says, and as we all know as veterans of many flare-ups, the pain will probably stabilize and calm down once you have rested.

    Take care
    Helen

    in reply to: No friends #47654
    Helen H
    Participant

    Welcome Claire!
    By coincidence I am also 52! It really hurts when you lose friends…but i have to say that those who chose to accompany you through the difficulties and ups and downs of living with pain, are better, kinder, stronger people. Better friends in fact.

    My husband is also a chronic pain sufferer, and before i had constant pain myself i found it really hard to understand.

    I have been amazed at the kindness of folk on this forum. I joined over6 years ago and folk were so patient and kind. Lees advice has really helped, and i have built a good albeit limited (physically in some ways) life.

    Hi to Ida, I hope you are getting through each day, bit by bit. The forum is a bit quieter than normal, but do remember than even when we are not actively posted, we all share the same experience of struggling with pain.

    Take care all
    Helen

    in reply to: Heel Pain After Stroke #47642
    Helen H
    Participant

    Hi
    I just wanted to say welcome to the group. It might be helpful if you could say whether it is a nerve pain, more muscular and achy, or whether it is in the joint.
    I hope you get some helpful advice here.

    Take care
    Helen

    • This reply was modified 2 months, 2 weeks ago by Helen H.
    in reply to: New hobbies during lockdown? #47638
    Helen H
    Participant

    Hi All,
    Firstly, what a creative lot we are! Anniekat, this is a great idea for a thread! I think the lockdown must be

    I am continuing to do my usual: colouring, painting and needlepoint but i have taken up life drawing, and am doing 15 mins per day. If anyone wants to find models to draw, then google FEGUARY on vimeo. I am finding it’s a good time to try something new, and it seems to help my mental health.

    LAura, have you thought of buying an Kindle fire? Our library service has free books you can download. Amazon also provides many books for free. I got mine recently to replace a tablet, and for me its’ideal as i often can’t hold a book open.

    Take care everyone

    Helen

    in reply to: Covid 19 #47621
    Helen H
    Participant

    Hi, I just wanted to say hello, and ask how everyone is doing?

    I have 3 types of pain- muscle, joint and nerve pain, and iam finding the nerve pain had to control over the last weeks. I am convinced it is because my nervous system is more frazzled than average due to increased anxiety. Anyone else finding worse nerve problem also a problem?

    On a lighter note, if you are chatting with family and friends on FB messenger, if you click on the smiley on your own image, a strip of options will appear on your screen and you can virtually ‘ wear’ different hats, wigs, moustaches, etc, which has caused much laughter on the darkest days, and would be a lot of fun for anyone includingkids.

    Stay in and stay safe everyone
    Helen

    in reply to: Gabapentin #47620
    Helen H
    Participant

    Hi, i am one for whom Gabapentin really gives bad side effects, but many people find it helpful. For me Amiltryptyline has been so helpful, as it gets me to sleep even when pain’s bad.

    There are many things i do that help me, from using heat pad and tens, to meditation and stretches. There are some really good ideas in the blue menu bar at the top of the page on self care- i think it’s under pain relief. Pain can really drain your mental health, and keeping that strong helps me cope better.

    It is clear from our forum, that the medication that helps one person, can be unhelpful for someone else.

    Take care
    Helen

    in reply to: Covid 19 #47611
    Helen H
    Participant

    Hi Lee and Jan
    Thanks for this thread where we can keep each other going. It is going to be hard on anyone’s mental health, but for us all there are particular difficulties.
    I am trying to stick to my daily routine as far as possible and to get some balance between being active, being creative and getting practical tasks done…and supporting my spiritual wellbeing with prayer and meditation….and of course as I have ME mainly resting.

    Here Spring is really coming into its own and there are blossom buds and leaf buds on the trees,as well as headings and daisies in the communal garden. I also saw some doves outside getting romantic so it really is Spring!

    My husband is a pianist so we have been singing a bit if you can do it, even in the bath, it really lifts your spirits…and helps your lungs.

    Keep going and stay safe everyone
    Helen

    • This reply was modified 3 months, 2 weeks ago by Helen H.
    in reply to: Plagued by injury #47594
    Helen H
    Participant

    Hi Matt
    I totally agree with the others- your body is giving you very clear mutiple messages to slow down. Like many on here I pushed myself harder and harder…and that never ends well!

    Adapting and finding the things that are helpful might not happen overnight, but you will end up in a much brighter place by being kinnd to yourself and taking it a day at a time.

    Take care
    Helen

    in reply to: unable to sit #47566
    Helen H
    Participant

    Hi Tigger
    I do sympathise, I am in the same boat, so I get the difficulties. In my case I have other illnesses, so don’t get out much anyway, but I have a recliner/riser so that I sit on my sitting bones as little as possible, and I lie down (a lot!) I also use heat a lot ( heat pads, hot water bottles etc).

    Have you seen an occupational therapist? They can lend a variety of cushions for you to try. For my mobility scooter I have a piece of thick gel ( that looks like large bubble wrap), and it does take the edge off some of the pain.
    Other than that, I work on my mental health, with meditation and creative projects.

    No ‘cures’ I am afraid but I do understand the limitations.

    Take care
    Helen

Viewing 15 posts - 1 through 15 (of 185 total)