I have Fibromyalgia & Endometriosis which means pretty much my whole body hurts all the time. I don’t often go out of the flat or walk very far but when I do it takes me so much longer than it should to get to where I’m going because my joints hurt so much & the fatigue is ridiculous. So I’ve finally allowed myself to acknowledge that I do need a walking aid & me being me, I bought myself a pink one 😂 But, I haven’t been out in public whilst using it yet. I’m going to a pain management conference on Friday so I thought that would be a good time to do so since I’ll be doing a pretty long bus journey & a bit of walking/standing. I’m anxious about it though. I’m 32 & when I go out you couldn’t tell much, if anything, is wrong with me. Starting to use an aid, essentially makes my invisible illness, visible & that is making me feel so many things.
Has anyone else been in this kind of situation? I’d be interested in other people’s experiences & any helpful tips for getting used to walking with an aid.
Love & hugs,
Steph
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chronically_steph_xx
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Hi
First, welcome to this wonderful forum of kind, caring, compassionate people. You will get lots of helpful advice but also have a laugh too.
I was very self conscious the first time I used my walking stick but no-one batted an eye lidas in staring but they were more helpful. I have succumbed to using a 3 wheeled walker with seat if we are out for a long time. We went to London last year and hired a wheelchair, I didn't think I would use it much , well I was never out of it!! I have many conditions causing pain so like you I'm in pain 24/7 . I hope you get used to using your stick and have a positive experience
Welcome to the group. Bright pink, sounds cool. You need to use what ever enables you, to do the things you want do do. I think It's a big step going out with an aid for the first time but if you had a broken leg, you wouldn't think twice about using aids to help you get about. xx
Thank you 😊 just talking about it here is making me feel much better about it all. I know that it won’t change things massively but any wee bit of improvement is good 😊 xx
Walking aids can make things worse unless used with care. You need to arrange your walking aid so that you are upright when you walk. If you walk bent forward you will start to put strain on areas that should not be strained. The other thing is do not grip the item. The tighter the grip the weaker the legs tend to become. This is because of a spinal reflex
May wife resisted using a walking stick for quite a long time until she had a fall. Now she will not go anywhere without it. In many ways you are right about a walking aid making an invisible condition more obvious. When she first started using it around the village she was asked many questions but very quickly they stopped.my wife did not go into great detail just she needed it for support. Walking sticks can alter the way you walk and put pressure on some areas. In my wife's case she is going to see the hospital physio/occupational therapists to discuss other options. She as a wrist condition and the walking stick at times can enhance the problems in that area.
It’s weird at first and I had to be shown how to use it cos I was doing it wrong lol it’s opposite arm to bad him knee leg I was using it same side and it will feel awkward and like everyone is watching you at first but it soon passes I don’t think I would get very far outside without mine now xxxxc
I understand that as you are still young, you will be more concerned with people's perceptions of you, but people don't think much about disabled folk; as soon as you are out of sight they will have forgotten about you. Folk are much more concerned with their own struggles to take much notice of us.
You need the aid in order to help you walk. It's nobody else's business how you get around, so please stop worrying.
I was so relieved to get my walker that I never gave other people a thought! I've had no bad experiences with folk, although dogs and cats think 'What the heck is that? ' and are wary for awhile. Like everything else they get used to it.
One day I was going to meet a friend coming off a train,during my walk to the station I fell in a very busy street in town,face down full force,as I watched my bottle of iron bru roll away out of my shopper bag a number of lovely people came to my aid,after an initial quick check i have not done anything serious I let several lovely passers by help me up,someone had even rescued my iron bru for me.An elderly couple assured me I was okay as I kept saying sorry,the gent said in eight to ten seconds after you fall the people that saw you do it are long gone and you may never see them again! I was a ten second wonder
I hope you do well with the walking aid Steph and just do what you need too regardless of what people may think :))x
Hi Steph, I am much older but its still hard to accept you need an aid. Mine became essential because I had osteo arthritis in both hips. I quickly progressed from one stick, to two, to a walker. When I started using the walker I really wondered why I hadn't done so months before.
The stick (s) will help you with balance, particularly going up and down kerbs, steps without handrails etc. But the walker gives more support, and, most importantly, lets you rest when you need to. Sounds crazy but I was joyous when I could join my husband in the supermarket instead of sitting in the car. Walk round a bit, help choose some stuff, then just sit on my walker and wait for him when it got too much.
I've had both hips done now and am much better but still need the stick for balance. But six months after the first op. we went on holiday and I was able to get around and sight-see with the walker, again because I could rest when needed.
Some points though. Don't just choose your walker because it is pink!. It needs to be sturdy, and high enough for you to walk reasonably upright.. You may put a lot of weight on it so check balance, especially if you are tall like me. You really need a seat that you can sit on reasonably comfortably, and somewhere safe to put a bag is useful, mine has a cage under the seat. The wheels need to be big enough and sturdy enough to cope with uneven surfaces, get up kerbs etc. And it may need to go into a car boot - check dimensions.
You can get a pink stick, mines bright blue!!
If you want to look at the one I bought PM me and I'll send you a link.
Hi, I have Fibromyalgia, and osteoarthritis, before that I had 3 years of Polymyalgia, but never used a walking aid, then I had a nasty fall just before Christmas and broke my hip. I can’t use crutches cos of the Fibro, so I succumbed to the need for a bright red walker. It’s amazing round the house, I can put a tray on the seat to carry heavy things around. I went into town yesterday and took the walker. I was very self conscious as. I look much younger than I am and felt that people were staring at me. But they were so kind opening doors for me and making way for me to get through. I am now thinking of pimping it up, badges, flashing lights and loud music😬😬lol Only Joking. The first time out is the hardest I think. But I am determined not to go through the pain of another fall. Blessings to all.
Oh Steph, I so so so so so feel for you. You must be feeling incredibly lonely with those two different types of illness. Both of which cannot be seen by anyone and both of which are incredibly painful.
I hope this will help you until you find your own pathway through this. I am going to share my story with you as like you I suffered from both Endometriosis and Fibromyalgia. I did however EVENTUALLY manage to find a way through them which has now given me a QUALITY of life which is much better. The pain of going through those two different but equally as painful and depressing conditions can be unbearable at times and I so feel for you. The reason I am sharing this harrowing story is so that you can see that out of complete darkness LIGHT can come. So hold on in there.
My Endometriosis started in my early 20's. My periods were not heavy but the swelling on my stomach made me look about four months pregnant. This is when I FIRST started visiting my Dr. Over the years I was told that it was normal, there was nothing wrong with me. In my late 20's a cyst was noticed on my left ovary - again I was told nothing to worry about, it was only an ovarian cyst, which I was told would come and go. Into my 30's I started to get agonising pelvic pain - more scans, ovarian cyst getting bitter, pain getting worse, Still I was told there was nothing wrong with me. I was trying to get pregnant so the hospital decided to do a laparoscopy to ensure that all was OK. I was so grateful. The consultant told me there were Adhesions in the Pouch of Douglas (?) but apart from that, all was well. I left feeling confused and worried. I was eternally grateful that from a pregnancy point of view I was ok !!!!!!! This is where I need to tell you my story. THE DR WAS WRONG. The Operation was performed by a consultant who did not know what he was looking at, he was not an Endometriosis specialist. The Adhesions in the Pouch of Douglas was an indication that I had Endometriosis. I went through many more years of agonising pain before anyone would listen to me. I eventually found the best gynaecologist ever who straight away told me that I had had obviously signs of endometriosis since my early 20's. He investigated STRAIGHT AWAY and I discovered that I required a radical hysterectomy. The devastation was heartbreaking. I tried three rounds of IVF, all of which failed. I had gone years without the correct medical assistance. Later on I looked up my medical file, only to discover that my Dr had written in my file that my pain was all in my head !!
What I have learned about Endometriosis is that
1. If you are hoping to have children it is best to try as early as you possibly can. Seemingly it can go away or reduce during pregnancy.
2. Make sure that you see someone who is truly knowledgeable about the condition a gynaecologist is probably best.
3. In the latter stages of my condition I was given a medication call Zoladex (quite heavy duty) but it would stop my periods and allow me to be pain free, which was a huge blessing. Apart from that I was on Morphine Injections, no other pain relief would work.
4. Join a site like this one (for Endometriosis) I managed to get a 'buddie' who I could call at any point should my pain levels get too much, or if I just needed a chat with someone who understood.
5. I was unaware that a hysterectomy would remove the condition - but the removal of both ovaries as well (although dramatic) will ensure a better chance of it not returning.
6. READ UP as much as you can about the condition.
7. People with Endometriosis have different levels of pain, some have more Endometriosis with no pain, and others have a little Endometriosis and more pain. Your pain is individual to you, so don't think you are over exaggerating at any point. If you are in pain - make sure you shout about it to your Dr, don't hold back.
PLEASE feel free to private message me if you feel that you would like any other information or just support on this condition.
If you are still reading, !
Fibromyalgia
I think I first experienced it after my hysterectomy aged 40. I still have it aged 58. However, I have discovered that unlike Endometriosis, the pain can be controlled to a certain extent. Not cured. It has taken many different types of tablets and cocktails of tablets but eventually I have found one that makes my life more bare able. I lived with the condition for many years - many of which I was unable to move or do any of the usual daily life routines that I was used to. I felt totally lost and down. I think I had almost given up and decided that ' this was it' so accept it and get used to it. The future looked very dark.
Over the past few years I have been trying a cocktail of pain killers and anti depressants (Duloxetine - which has shown that it can work on pain nerve conditions as well as work as an anti depressant). I am now on both Duloxetine and Gabapentin (a pain killer) and have found that although my pain and lack of movement still exists it is definitely at lesser level than if I was not taking them. I am also looking into the possibility of undertaking a course of Mickle Therapy - which is a talking therapy - it is to do with the linkage between the mental and physical self. BE KIND TO YOURSELF BEFORE OTHERS. LOOK AFTER YOURSELF FIRST. I know that is hard but for your own self you need to take heed.
You sound as if you are in such a bad place. I cannot imagine how I would have coped if I had been experiencing both conditions at the same time. You are a STAR. The fact that you have gone as far as getting your walking aid and are facing the fear of going outside for the first time tells me that you are an AMAZING PERSON. Hold your head up high and face the world with pride at who you are and what you are coping with. Those who go through life without having to face it with an INVISIBLE illness cannot possibly understand what you are going through. On this website you will find a family - one who does understand and who can help you go through this.
Don't despair you WILL get into a better place. Endometriosis IS curable - all be it through an operation - but you will NOT have to live with this all your life. Fibromyalgia is slightly different ! but there are ways to get help. Who knows a tablet that cures FM might just be round the corner. We can all HOPE.
Take Care, HUGE HUG and go out with pride at who you are. XXXXXXXX
Hiya and welcome. I can understand that you feel cautious about using a walking aid, my friend with MS was the same. She said that once you use an aid, you become almost invisible as people just see the stick and not you. She has finally given in as she’d had a few falls (defo not invisible 😱). My argument to her was that, yes, people tend to be in their own little world when Out and about and may even be in a great rush but I do believe that if they see an aid, they usually give you a little more time in a queue or getting around them or whatever. No one knows to do this unless there is a “clue” to them.
When I volunteered for RNIB I discovered that yes, people with a visual impairment used a white stick but people with and/or a hearing impairment carried a stick across their chest as a “clue”.
With Fibro being an invisible condition and many of us “look healthy” people have no reason to allow us little consideration.
Sorry it’s a long one and I hope you get what I’m trying to say.
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