Where do I start?

[Ganon92]

Hi all, where do I start? I'm in agony all the time. I want to exercise to lose weight but can't as I've got fibro, it hurts too much. I have however lost weight due to stress pain and not feeling hungry because of those feelings. I'm at a loss. I'm only 23 and I've got a walking stick.. It's not fair. I feel so hopeless :/ sorry to Moan it's just I feel so depressed.

[Hidden]

I feel for you. It is not something you want at any age but at 23 it is nasty.

I wouldn't let the walking stick put you off, take whatever help you need to keep you mobile. I hope it is one of the quite fancy colourful ones. At least with the stick people are more sympathetic as they can see your disablement.

This is a good place to have a moan, everyone understands and there are plenty of young ones in your shoes. Better out than in, I have been told

Have you tried just doing gentle stretches, then lead up to an exercise programme that you can do. Just tailor it to what you can do and work on the rest. Now I should go and take my own advice

[Ganon92 in reply to Hidden]

My stick is purple with nice floral design on but I saw a great one the other day - had lightening bolts on it. Must get me one of them I think I've found some people laugh at me because of the stick. Gets me down.

I have tried stretching but as I have hyper mobile joints they dislocate easily.

As I said I'm starting to feel awfully down now.

[Lou1062 in reply to Ganon92]

Anyone who laughs about you using a stick is not worth your time. As to exercise it may be worth seeing if your GP surgery have a gym scheme in your area, if not there will be someone at a local gym who can tailor a gentle regimen for your needs just to keep you mobile, I'm much older than you so my exercise is a daily, very slow, walk and gentle stretches, you need to build up very slowly but for safety you will need help, maybe ask for physiotherapy also hydrotherapy is good too. All best wishes. Lou xx

[littleeffie in reply to Ganon92]

Take no notice if other folk laugh or comment and remember what I tell my kids.

Do you need to know that person -No.

Do you want to know that person - No.

Then their opinion has no bearing on your life.

I have used sticks, crutches and knee braces since teenager and at times a wheelchair. I too have EDS hyper mobility.

My two boys also have this and have to go to school with this. The youngest has knee braces a crutch and self propelled wheelchair.He has the occasionally down day but on the whole he has found using the above has meant he can keep up with friends and not hurt as much so do try and see the positive side and to hek with everybody else as stressing will make you tense up and hurt more which uses up more energy. Me and the boys can fully understand how the pain and fatigue is hard to deal with and being still young so moan all you want here as we care but ignore the ignorant out and about as you're far better than they are by just getting up and facing the day.

Take care be thinking of you x

[Hidden in reply to Ganon92]

Sorry, I am having trouble with the lack of notifications and emails.

Anyone who laugh or makes jokes at your expense is below you. My Mum always said that sticks and stones may break your bones but names would never hurt you.....unless you let them I can understand your getting down and maybe it is something worth talking to your Gp about. Catch it early and put it in its place.

I can understand about exercises causing more problems, my daughters friend was taken out from school more often than not as her knees would dislocate..... Ouch!

Sometimes just being able to talk to someone can help chase the downs away. Do you have anyone who you trust that could listen and not judge. There are all of us here too if you just want to have a good rant and get it out.

Sending you a very big cuddle, I think you need one and if you want to talk more openly you can pm me. If I can be if any help I will certainly try

[Ganon92 in reply to Hidden]

Thank you I just feel so awful. As I said in my post below that my wife is amazing but I'm not the girl she met anymore. I'm crippled by this illness

[Hidden in reply to Ganon92]

You may not FEEL like the girl she met but you are! You are just feeling a little down, it happens, nobody said that a chronic illness is a picnic..... If it was there would be more people joining in sorry, I joke that's one of my ways of handling it. Rant and rave on here, talk to your wife and tell her how you feel, I bet she doesn't hold it against you. Let her help, but figure out what you can and can't do. This is a brilliant place to offload

I am confident that you can find a way through your slump, you're not on your own

[Regnofibro1]

I understand where you are coming from. I have had a stick for so long it's hard to remember what's it's like not have one. I got my first one at age 11. Of corse back then I was a bit of a pain to my mom. She made the mistake of letting me pick out my own. A nice piece of metal in my hands and it became a weapon. If it helps any I am now 50 and just now advancing to a scooter. My mom use to tell me back then that I shouldn't feel bad there are people a lot worse off. It didn't help but at least she tried. Now after growing up with one. I learned that what other people think is not my problem. It matters most what I think about me. So don't let others get you down. You do what you need to do for you. I also am double jointed but I have found gentle stretches do help. You might try yoga or ti chee helpful. Anything you can do that doesn't hurt to bad is helpful. Just please take care of you and put a smile on your face. It makes others wonder what you are up too😄😃😂

[TheAuthor]

I have read your post with so much pain and sorrow for what you are having to endure, and I sincerely hope that you can find some resolution and relief to these issues. I am delighted that you have been able to come on here and express how you are feeling as it is a start.

I was wondering if you were receiving suitable medications for your Fibro that may help you in your goals? It may be worth discussing how you are feeling with your GP or Medical Specialist.

I would like to point out that in the UK if somebody laughs at you for using a walking stick it could be perceived as a disability hate crime which is a criminal offence. I would be tempted to point this out to anyone who tries to laugh at you. Do not give them the power over you that they clearly crave for whatever reason, which you would do by getting upset.

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

[Ganon92]

Thank you all so much for such kind replies. The meds I'm on are zapain (takes the edge off the pain) and amitryptaline 10mg. I'm so scared of exercise, I know it's gonna kill me off. I cried myself to sleep in my partners arms last night because of it. I feel like I'm grieving over the person I used to be as I know I'll never be her again. No one except my wife understands. My own mother has even said "get over it, I had fibro and I cured myself" not what I need to hear. I suffer from mental health problems as it is but now this depression is starting to get hold of me, all my old symptoms are coming back the next available appointment with my psychiatrist is on the 19th of January. I'm struggling to imagine staying this way for that long (depressed not the pain as I know that ain't going nowhere) I didn't know people laughing is hate crime. Might start pointing that out. The hardest part is that the bus drivers don't take into account the stick and won't lower the bus for me as I "look well and are young" to top it off I've had DLA for as long as I can remember due to mental illness but they're making me apply for PIP. I'm so stressed they won't reaward, even on the mobility side. I can't even dress myself. I haven't showered in god knows how long. I rarely wash my hair now. It all hurts to much. I can't use a tin opener, I can't open jars (when I was Mrs muscle who could open anything) I'm just feeling rough at the moment.