Invisible pain

[rowantree]

I find dealing with invisible pain very hard. I try not to limp because I don't want to cause problems elsewhere in my body, and both feet hurt in different parts anyway! I try to get on with life without asking others to do too much for me, because I want to be capable. I've stopped wearing my wrist splints during the day because I'm worried my muscles are wasting, they seem thinner and my bones stick out wrong. But then my hands just hurt so much as soon as I do anything! It's so hard to have pain that others can't see.

[tettridge]

Hi

I know just what you mean as I feel the same way. It was definitely worse before I went on a pain management course, although they do not profess to cure you or anything like that but they do help with all other aspects like the breathing and mindfulness as well as the biggest thing for me was seeing so many other people who had similar feelings as I did, I was not the only one with the pain, and through them I found this site and there are so many people who are in the same boat it feels good and there is always some one who has similar and may have a suggestion on relief etc.

Sorry for going on but all people on this site know just what you mean, do I keep the neck collar on as it is weakening the muscles or go for the pain, the wrist splint the knee support etc.

I now have an electric wheelchair and that is such a boon as it lets me get further afield than I could before.

Kindest regards

Terry

[welshnut]

Please understand you are not alone and my thoughts go with you .

nutty

[thenunn]

as tetridge said, i think we can all feel with you. it is a very hard balance,i try and listen to my body ,how much it will take before it says stop. Mindfulness,breathing,pacing and knowing there are others far worse off all help me. I was feeling ok this morning ,just walked to my local shop which is about 100 meters and at about 4 houses along from mine the pain was yuk,but i continued all be it at snails pace lol. i got the milk and returned at same pace ,with stops and a bit of stooping but its such a sunny day and lots of flowers to enjoy on the way so that helped. just had my cup of coffee so worth the effort lol . best wishes x

[Hidden]

Hello Rowentree

Bob Here

Almost all have difficulties when walking, generally it becomes part of our conditions. One problem that many have due to this is the problem of stress on different parts of the body where we would not think would be effected as we are putting stress on further joints. .

With this sometimes we should ask to see a podiatrist, who will possibly supply shoes and inserts to correct the problems associated with effected feet. Several years ago I was referred to the podiatrist and was given a pair of corrected footwear , as I had not been able to wear shoes for nearly ten years. Even in winter I was wearing open open toed sandles during winter in all weathers.

The problems I had were suppressed and extra hight was put in one sole and corrections to my step enabled me to walk, and my posture improved.

Now I have two pairs of shoes one black the other brown and when the sole and heals wear out I drop them off and they are repaired. When the shoe is worn out they are replaced. Also you need not worry about the designs been outdated they have a very good selection of designs. Give that a try.

Generally these corrections cannot be seen by the outside world

With regards to your hands and wrists, I also have splints although I do not wear then all the time, I normally wear them at night and restricted periods throughout the day. Try that the corrections cannot be seen when worn

Regards disability and the wearing of aids or use in public. If. people have so little understanding, it is their problem , not yours if you are comfortable and living your life with these aides just carry on wearing them. The aids are helping you carry on with life without a possible disadvantage that able bodied do not have

All the best

BOB

[rowantree]

Thanks everyone. I do have insoles from the podiatrist, new ones a few weeks ago. They don't seem to be helping much. And I'm trying to stop using the splints, not because I'm worried about what people might think, but because I'm worried what else they're doing to my wrists. I have got over what people might think if I wear them! It's actually easier if I wear them because at least people know I'm in pain.

Also it all just adds to my previous 'waiting' gripe. I feel like I'm deciding for myself how often to wear splints and supports because I'm not getting enough advice from the professionals who may be able to help. I want to say the insoles aren't working shall I sto wearing them? The wrist splints seem o be making my wrists look weird, is that ok or should I stop wearing them? Are there exercises I could do to help any of my symptoms? Should I take tramadol every evening when I can't bear the pain any longer, or wear the splints? Are oval-8 splints a good idea?? But all the professionals seem to pass me on to the next, and meanwhile I have to wait to see them.....

[Hidden in reply to rowantree]

I can understand how you feel, I have hand splints but have found that they make my fingers worse. Thermo gloves help sometimes, Oval 8 splints are something I am looking into ..my right hand now is so painful...thumb is permanently under palm and there is little grip. Am frightened that my left hand is now going the same way. I am waiting to see a podiatrist as my feet are so bad that wearing shoes is difficult. Being passed from one department to another is depressing..so little help or advice given. I agree that pain relief is best used to stave off pain..dont wait until agony sets in. You HMS too...join Facebook HMS support group theres a lot of support and advice on all aspects Next GP appointment am going to chase up all the recommendations made over last 4/5 years that were never followed up on. I think I hae had enough. Hugs for you.

[rowantree in reply to Hidden]

My feet are the opposite, I can never walk bare foot or without my insoles, although my insoles only help for half an hour or so. I have very high rigid arches, but my feet roll in a lot. I've had bunions and now I have trapped nerve in my heels and affecting one ankle! It's so hard to stay positive when all I want to do is sit down! And I'm waiting for a de quervans release operation on both hands so even if I do sit down I can't use my hands without them hurting a lot too!

[Hidden in reply to rowantree]

My feet today are driving me nuts.....I have a high arch to my foot,but I think I have plantar fascitis or something similar..and bunions and a little left toe curled under others. My achilles tendon is painful and under my heels. Could cut them off. Am sitting down but still paining...And if another doc says dont focus on the pain, distract yourself I may scream.

[Hidden]

With painkillers they work much better if you take them BEFORE the pain sets in. They are much better at preventing than stopping it. If you have a prescription to take it so many times a day, follow it. You will feel better. Being "strong"by holding out is not helping yourself because your pain pathways will only get entrenched and then permanent over time. I improved so much when I got this advice. If you can knock out some of your pain pathways with painkillers your quality of live and how much you can do may i rove over time. This worked for me. I am doing way more than 5 years ago. Good luck.

[superannie in reply to Hidden]

I agree with what you are saying. I have also learnt that trying to do it all is proving nothing to anyone! Take all the help you can get. It is not a sign of weakness to admit you cannot cope!

[rowantree]

My problem with painkillers is either they don't work or he side effects are awful. I have found that tramadol helps but I can only take it if I'm not working or driving as it makes me spacey and dizzy. I will join the HMS Facebook, and see what other painkillers GP can suggest. The last GP said -sorry there isn't anything else you can try!

[Hidden in reply to rowantree]

Hi Rowantree, GPs are not trained in chronic pain, or in medicating it. Some even use the palliative care model, which they should not. Press hard to get a Pain Consultant. Trust me, your life will improve and some meds will be found that work and that you can tolerate. Tried morphine sulphate? Oxcarbazepine? Valproate? Topiramate? Clonazepam? Loratedine? Gabapentin? Diclofenac? Even paracetomol 1g 4x day is good because it controls prostaglandins. It took them a year to get me right, and my meds are tweaked every so often but not by GPs. Spinal (S1 S2 L5) injections of electricity and or steroids could help with your feet, all the nerves are sourced there. They helped with mine, and some pain clinics do them. I agree getting good orthotics is tricky. Are you wearing good shoes? I find that although expensive Salomon 3D Ultra series of trainers are the best and have an easy lacing (pull and click) system. You can also get Gore Tex ones if you go out in the rain! Good luck. If you live in London and have cash for orthotics there is a brilliant guy who does the French Ski Team and Drs all over London refer to him. Message me and I'll give you the details. Good luck.

[Hidden]

PS Beware of privacy on Facebook I mentioned the phrase "two singletons" on private messaging with no ulterior motive and within seconds was inundated with ads for hunky 42 year old men LoL!!

[rowantree]

Thanks bowbells. I will ask to be referred to pain clinic as well as hypermobility clinic!

[frame1 in reply to rowantree]

Hi Rowantree, I cant see 'Hypermobility clinic' link. What is it?

[Hidden]

Wow, I have hyper mobility too. I didn't know there are clinics for it. can you tell me more please?

[Hidden in reply to Hidden]

Look on HMSA website for clinics and other info

[Hidden in reply to Hidden]

Thanks, will do

[Hidden]

Facebook groups are mostly closed..and admins monitor , if any harassment people are removed after a warning. Check security and privacy settings. HMS sites are so good for info and support.

[Hidden]

I didn't mean harassment Bendy. What I mean is what you put on Facebook is lees secure than a Postcard. Do you want banks, insurance companies, future employers, employers, friends knowing your confidential medical info.? I'm just saying when we post we have to be aware. Google and Yahoo are dodgy too. THIS site is secure.

[Hidden]

Bendy, read my first post again: PRIVATE messaging on Facebook is supposed to be private. With me, within seconds, server algorithm picked up two words I'd typed and sold them to companies as "Bowbells is single and looking for a man". LoL!

[Hidden]

Living with invisible pain, only those that are close to you and notice the body language and facial expressions!!! Strangers dont get it, they look at you when parking in a disabled bay, hello i have a blue badge i am allowed to park here, but why should we feel like this? they dont know what it is like to live like we do. Should we have to live in silent, no not if you are suffering it is good to share and get support, you only have to ask, in the end it makes life less of a struggle and less pain to suffer from.Give it a go.

[Poppy_Ann in reply to Hidden]

Hi astoneham, i am the same as you living with invisible pain, i had my back broke when in the army and now have a blue badge the most annoying thing i see is people who park in the disabled spaces who then get out and run for the shop's, also when arriving at my local supermarket and every disabled parking place is full but almost none of them are displaying a disability badge but the store does not do anything about it the cars that do it mostly seam to be nice flash cars and their drivers do not want them scratched so they use the disabled parking as they are wider, it is time for all disabled people to complain to the local shops about the parking and insist that they do something about it and either just tell people who are not disabled that they cannot park their or give them a fine for doing it and then the money raised from the fines they should give to any disabled charity in their area.

[tettridge in reply to Poppy_Ann]

Hi

just make sure that they have no badge showing and park behind them if in the superstore care park and if there is room park beside them so close they have to use the other door and in both cases go to customer services and let them know and they will put out a message on the tanoy with reg number and make of car, this does work but if like me you have a wheelchair adapted vehicle by the time they get back to the car and you make an exhibition of moving your car, they will not do it again. I know it takes time from your shopping but sometimes it is really rewarding.

Kindest regards

Terry

[Hidden in reply to Poppy_Ann]

I totally agree with what you have said i think we should make a stand. I tend to embarrass people by saying out loud a comment about either parking in them or being disabled!! Why should we physically or mentally suffer from not being able to park in an appropriate place.

[rowantree]

Definitely agree Poppy_Ann! I didn't know the shops don't enforce it!

[welshnut]

Some supermarkets do enforce disabled parking and especially Asda since that poor gent was killed in a fight over the space. I once forgot to put my badge up in Sainsbury and returned to a note reminding me to display it. They had checked my tax disc which states disabled on it and had let me off the fine.

nutty

[teadrinker]

It was bad enough when I had babies and shopping and had to get those portable car seats in the car via a narrow space because the parent and child parking spaces were all taken by people with no children accompanying them - so if people aren't going to take notice of that they're not going to take notice of disabled spaces.

In seriousness though there's a report on the news today that disabled people feel life has got worse since the Paralympics and that they are being judged negatively and wrongly as "benefits cheats". Having Invisible Pain is probably regarded as something that's not a "real" disability by people who don't know or understand any better.