Hi, my name is Car (short for Caroline) and im 46 years old. Following an accident in Aug 2009 (whilst I was one week post-op after a major gynae operation), I have had severe pelvic pain ever since. I have been on all sorts of meds since then, but now I take just Oxynorm 20mgs every 4-6 hours. The pelvic pain is mainly due to adhesions, muscle damage and nerve damage . My left leg has been affected by the nerve damage also, and has caused my balance/walking to be affected. Now, my ankles , knees and for some unknown reason my hands/ shoulders also hurt. I do know that losing weight would help. I tried earlier to get some potatoes out of a lower cupboard to cook tea, and ended up bursting into tears cus I couldn't do it. I am a carer to my autistic son and I have 3 other kids aged 12 - 17 years. My husband works hard but has a heart problem so cant do all the housework/shopping/cleaning for me. I need to be able to do it. I can hardly move and im in loads of pain with my joints. Anyone in the same boat?
I can't cope with this pain anymore : ( - Pain Concern
I can't cope with this pain anymore : (
I've been at the point where I couldn't do basic daily tasks, and still have a lot of limitations. What might be useful for you would be to call social services or occupational therapy, tell them of your difficulties and ask if someone can assess whether there is any help you can get. OT are great at giving out aids to make certain tasks easier, but there may be other suggestions or support that will work. As far as shopping goes, have you tried online shopping with home delivery?
Losing weight isn't the only answer, but if you can do it, it will definitely make you feel better and take a wee bit of pressure off your sore joints, and its something that you can do for yourself without relying on doctors.
Hello
One of the first things you could try is visit your GP and ask to be sent for a Consultation with a Pain Clinic, they will look on your condition, medications and any other treatments that may help you.
You will be educated in Relaxation Techniques, Pacing yourself so you can know when to stop and rest. One other thing they will help with is the use of a two channel TENS. You should also learn how to discuss your pains to a medic Specialist and negotiate your pain and medication,
One other thing you could be shown is posture as many people with pain can reduce a fair amount of pain by sitting correctly and walking efficiently a Pysio should help with this
Discuss this with your GP and He will decide on the best treatments and NHS Courses that will assist in coping with your disability.
Also try and get a visit at home from an Occupational Therapist, they will look at you home environment at try and assist in making changes so you can move around your home
All the best
BOB
Hi Car,
sorry to hear you are struggling so much. Please don't be afraid to ask for help, and to admit that you can't do certain things at the moment. If you call your council, they should be able to provide some help.
Also, someone recommended this book to me, that you might find helpful: A Headache in the Pelvis - it's about someone's experience of pelvic pain. It has really helped some people. Also, you could try a cranio-sacral therapist – try for a few sessions, and see if it helps any. They can help to calm down the nervous system and help the body to start healing itself. (which it won't do if it is under stress)
If you do manage to get an appointment to a pain clinic ask about neuropathic pain as it sounds like you could have a bit of that in the mix, the way to spot it is it doesn't respond to normal pain med's very well at all, they will probably put you on Gabapentin or Pregabalin but I would ask about getting Sativex, chances are they won't prescribe it as its ridiculously priced but its worth asking all the same.
So sorry to hear how you are suffering. From a practical standpoint, do you receive any benefits in the country where you live? If you do, maybe you could pay for a cleaner to help around the house, or if there is someone else you know? Are you getting enough respite from your caring role? You have a lot to deal with and you cannot do it alone. I am sorry I cant be of that much help to you, but all I can say is that I have suffered with chronic pain for over thirty years (and depression) and I have eventually found a fantastic GP. I still have bad days but they are less than before. Take care
Hi Car.
You have my sincere sympathy. I have been suffering from widespread chronic pain for a few years now and I also look after my adult son who is Autistic and know how hard work it is. How old is your son? Does he go to special school? If he's an adult does he attend a day centre?
My son attends local day centre 3 days a week and attends Mencap gardens 1 day a week these places have been a godsend to me over the last few years allowing me a break in the day time.
Do you have any family close by that could help? Even if its only cooking you a meal which you only have to reheat in the evening. I'm not trying to interfere but can't your other children help with housework and cooking, even if they only peel veg. for you [or just get them out of the cupboard].
I limit how much I can do in a day, if I have to chose between hoovering or ironing I do which is needed most urgent then do the other things on another day. If I cannot do anything because I am in too much pain I do nothing, I always tell myself the housework/washing will still be there tomorrow.
As others have said I would make an appointment to see your GP and ask to be referred to Pain Clinic. I am ongoing with pain clinic at the moment and its still very early days yet for me. I take every day as it comes.
Please never be afraid to ask for help. I learnt the hard way until someone told me I was doing my family more harm than good by trying to soldier on alone.
Caz.
Hi there its certainly worth remembering you're a very strong brave woman getting up everyday to love & tend to your family, I totally understand your frustration & daily battles...I've been dealt a similar hand of cards! On the pain front I've tried everything short of methodone & found that a mix of tramadol 150mg slow release x 2 p/day & indocid (a very strong anti inflamitry) 100 mg suppository x 1 p/day works better than anything else...if u can't use sup (took me ages to master!) then tablet form avail but not as strong...maybe ask doctor at least to try Best of luck!
Hello car, you do have a mammoth task each day caring for the family and yourself especially with ongoing pain. I can't add much to the other suggestions, as I have tried them all over a twenty year period. But you are doubly entitled to a council assessment of need one as a carer of your autistic son and two as a disabled person with an ongoing disability. you have my best wishes that you get the much needed help to lessen your burden of care, follow the replies on this page and hopefully soon you will get a better relieve for your pain.
Hiya hun, welcome aboard I feel you, I'm in the same boat with the constant pain and really struggling to do housework sect. I've two kids 7&12. Have had to get a childminder to take my daughter to school as I'm housebound have been since September. I admire you also having to cope with your son tat must be really hard. You should contact release they work with kids by giving them days out and youthclubs so you can get a break its usually part of your local YMCA. Your son could also go as they work with kids with special needs aswell.I also found tat sitting down with the whole family and telling them tat they need to help out more in the house and work out roata so tat they know there's things tat your finding difficult to do and tat by helping you more could benefit the whole family. Also try pacing yourself do a bit and have a rest its really hard to do I struggle myself. Ask your doctor to refer you to a pain clinic and find out if there's anything else tat will help reduce your pain. I hope this helps and were always here if you need to have a rant. Take care Sue xxxx
Hi Angel
You have the right name on here, your angel wings ought to be studded with diamonds!!!
You ha e been given loads of fantastic advice here and i hope that most of it will benefit you and be given to you.
Admitting you need help is the hardest thing we ever have to do! And to have to admit it to ourselves is the hardest pill to swallow!!
I thought i had accepted my disability (choked on food and right side of body went numb 9yrs ago, still same now) till i had 2 bad falls (everyone else say faints) over xmas now feel like child under constant supervision, but i know it's for my own good, just hate not being the mum in control.
The only thing that helps me through the rock bottom times is my belief in angels, past on to me when i lost my mother in law.
This poem i give to people who are in need of some comfort and support and you definitely need it.
When angels sense you need them
And angels always do
They come unseen from everywhere
To help and comfort you
They hover close beside you
Till all your cares are gone
Till they can see you're ready
Once again to carry on
Then some of them fly away
And take their gentle touch
To other hearts that need the love
Of angels very much
But one at least stays with you
As your constant friend and guide
For guardian angels never leave you
They are always by your side!
Print it out and put it where you can get most comfort from it!
Take care and angel blessings xx
Hiya, I have chronic lower back pain. I get the pains in my legs, mostly the left one. But over the last 6 months I've been having problems with my hands and feet also. I can get why my feet hurt but have no idea why my hands ache! Saw the rheumatologist but he just did xrays then discharged me. I feel very stiff all over which is probably tension. Have you tried massage to relieve the pain? It always loosens me up and helps me to relax x
Hi Car, I was going to say I am so sorry you are suffering in this way (I am sorry) but from my own experience pity is the last thing you want to hear. First of all you need to tell your doctor how you feel as you are definitely not in a good place. As you are so limited in your movement you need more help i.e. pain control clinic and phisio also hydrotherapy if you have not already tried this ask your doctor to refer you . concentrate on one thing at a time that you want to achieve and try to stay positive Its hard very hard but please don't give up. good luck to you Car.
Hi
My name is mike and I was in a van accident. I was the passenger, the van rolled onto its passengersside and then the driver had a soft landing on me. Since this happened in Feb 13 I have been increasing pain which varies from my neck down both arms to my elbowsand then across my shoulders and goes down my spine across my pelvis and down to my knees. I had back problems before the accident, occasionaly over 30 years since childhood, but thisis a totally different level of pain.
On a good day 4 tramadol cope with the worst of the pain, buton a bad day a bucket load does not touch it and my GP is trying to make me reduce me to 30 Tramadol for a fortnight!!!!!!!!!!
I guess that you can relate to what i thought about that.
Stick with it and try to only do what you know you can cope with as forcing yourself will only cause you more pain and demoralise you.
thanks so much for all your helpful, lovely support. i am very grateful. The pain is still AWFUL, but i am coping better and my kids are helping with the jobs around the house that i cannot manage : ))
Thanks! I will take a look. I'm not over weight and I do have a proper sports massage but only when I can afford it! I'm looking into yoga and pilates also.