Hi, I'm new to Pain Concern but am looking forward to being part of the community. Four years ago my daughter developed chronic pain just six weeks after having a C-section. Since then her life and the lives of her family have been extremely difficult as we have all without exception become carers. Despite seeing many many professionals (too many to count) and having various tests, she still does not have a diagnosis. At times she has been told to go and live with her pain, alleviated slightly by numerous drugs which come with their own problems.
Is there anybody in the community who has suffered a similar fate? I would love to chat with you.
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mumthecarer63
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Sorry to hear of your daughters suffering nothinh worse than seeing your children suffer no matter how old they are.My daughter was diagnosed with autoimmune arthritis aged 25 and I eish I could take it away from her and have it instead.Whete is your daughters pain? Is it in a particular area sich ad back/abdomen or general all over pain?
Yes, it has been so hard on her family. Her husband seems unable to accept what has happened to her and struggles. Her pain is in her lower back and legs and yes, I would willingly swap places with her so she can bring up her little boys.
Yes MRI scans but not on her pelvic area .... that is the next thing we ask for. She does go to pain clinic and has been offered a place (after four years of waiting) in the pain rehabilitation unit. Three weeks of it; three days a week. I hope it helps her a bit.
I hope the pain clinic helps I used to go.Is she not able to do very , uch due to her pain such as walking, cooking, cleaning, bathing , dressing etc? Just trying to het the picture of how badly this affects her daily life
She can walk but finds it very hard to stand for any amount of time in one place, so cooking, cleaning etc., is very difficult. Often she is too exhausted from the pain and meds to want to shower or dress. Everything is a supreme effort.
Not sure what's going on.
Have you tried alternative therapists? they are very skilled in helping those whom the nhs can't do anything for. Choose them carefully, start with one, give it 4 - 6 weeks to see if it helps. Ask questions all the time. Get to know the pain, what works doesn't work. Visit as many as you can, because they treat hundreds of people and have a huge symptom base to tap into.
They work. In that they reduce stress, encourage relaxation of the body and mind. They give you exercises to do at home. It's safe with no side effects. Ther's plenty to choose from.
Once you know how to relax your body, you can do it yourself.
Meditation is good to give the brain a rest. There are plenty online, just choose one you like the sound of. Do as often as you want.
Good idea to do before something you know will cause pain. It chsnges the brainwaves you use, getting deeper into the subcobscious, clears a lot of worry away.
Found a new thing - study music on you tube. Again, choose one you like the sound of, have it playing in the back ground when doing things. It works a bit like meditation by changing the brainwaves you use. A bit like tuning a radio to exclude interference.
After a couple of months, there will be improvement in all areas. You'll have more info to give the drs, which may help them sort tjings out. Or you might like the alternative route and stick with it.
Yes I would recommend cranio-sacral therapy (but you may have to try a couple of practitioners, as they don't all help everyone). A good one can 'remind' the body that it can heal itself and also help with traumas to the body (such as childbirth). Also tell her to learn about pacing - where you alternate activities that cause pain. You are meant to change position before the pain starts (so she'll need to do some timings first, to see when things start to hurt).
I know some people find acupuncture helpful, though I didn't. And there is also electro-acupuncture, which I had at an NHS pain clinic - and that helped a little for me, but a lot for others. Sorry your daughter is going through this - she is lucky to have some support, such as yourself. Though she must have some guilt about not being able to take care of her children - a pain psychologist could perhaps help with this, as well as meditation. There's also a book by Vidyamala Birch that might be useful - she has chronic pain from a back injury and has developed a method of adjusting to this and also towards getting better.
Thank you so much for your thoughts. It helps enormously to talk to someone who knows what this is like to live with. When this first happened to her, life was very bleak indeed for at least a couple of years. The children are now six and four so things are a little easier for us all and she is learning to live with the pain. However, she is so limited in what she can do. If she goes out and about for more than an hour or two the pain kicks in and knocks her for six. That then results in a 'sofa' day or a 'bed' day. She isn't depressed and says she is not unhappy and is carving out a successful career making jewellery and wedding posies. This takes the focus off the pain when it is at its worst. She's had various alternative treatments but as you probably know they all cost so much money. She is currently seeing a hypnotherapist who is working on her confidence and I already see a change in her demeanor. A good friend has also trained in Reiki and she has offered to try and help her too. I just feel so sad for her as she can't take her boys out and about and do the normal things most mums can do with their children. The next appointment is next week at the hospital and I think we are going to try and insist on a scan of her pelvis (she had SPD very badly when she was pregnant) so it could be that at the root cause of nerve damage as a result of the C-section.
Could she have joint hyper flexibility? Is she "bendy"? Sometimes this is not established until pregnancy and I note you mention SPD. Hyper flexibility by itself can be very painful and exhausting, let alone if there is nerve damage. Naturally, any kind of heavy end therapies need to be approached with caution. I think a rheumatologist would need to establish hyper flexibility.
She did have cranio sacral therapy at the start of this but unfortunately it did nothing to alleviate the pain, just sent her to sleep. She did enjoy it though as it relaxed her a lot. Again too expensive to keep up.
OMG- I thought this was my dad that had posted this as it is me to the letter!
My little girl is 5 in August and I have suffered with chronic pain after my c-section; lower back pain and leg pain(both legs) Can't stand or sit for too long and same for lying in bed. have seen numerous consultants from gynaecologist, orthopaedic surgeon, rheumatologist, neurologist, countless physio appointments, pain consultant and no further forward yet. Diagnosed with coccydinia and recently saw a sleep consultant (excellent) and I just found out I have iron deficiency anaemia but apart from this it has been 4 years of pain killers and one viral infection after the other with nerve pain, etc Interested to hear what is going on with your daughter. I find the GPs become quite disinterested after a while and you start feeling like a hypochondriac but you know yourself that something is not right...I have a very much cause and effect reasoning so belive something must be causing the pain chronic pain. Happy to chat as I am still as yet undiagnosed but have to keep going each day - I have a good career but this is definitely taking its toll.x
Hi I have coccydinia and get excellent relief from the pain by having steroid injections into my coccyx, the relief lasts about 6 months and has improved my lot no end.Have you tried this? X
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