Does anyone else with Fibro use a walking stick?

I'm so pleased to read this, now I have the same attitude.It has got me down with my ME through using my walking stick in public in the past but not now.

i have been turned down for DLA twice and never appealed cos. was so stressed. The last time someone came out to assess me. I was practically bed bound. He asked me all kinds of questions. I told him I was unable to cook and the kids were living on ready meals and takeaways, I was unable to bath and only managed a quick wash at the sink every few days,. He could see I had no bra on and he even asked ow I managed to get my bra on. I told him my daughter has to help me dress if I ever went out. He could see I lived in a bungalow. Yet when I was declined it was " you are able to prepare yourself a meal, you are able to get in and out of the bath, you are able to dress yourself, you are able to walk up stairs!! Etc etc. I just burst into tears - the guy obviously thought I was a complete liar! For what reason?! S that I could stay in bed all day

So that I could stay in bed all day, never go out and enjoy myself, not feed my children properly and not spend quality time with them, nott visit my little narrowboat, not enjoy work etc. yeah of course thats the kind of life I would choose! Sorry for rant but it is so infiriating. I have applied again and just awaiting the decline but this time I will appeal, I simply cannot work enough to manage and know I will be spending the majority of time off sick. Its just the way it is now. The last few years things have become worse so its not just gonna change. Sharon x

I had two declined and this last application took 9 months in total to be accepted. I had to ring every week to find out when my assessment was and ended up taking a cancellation appt. I get basic which is less than £90 a month. Its wrong that we have to fight to get fibromyalgia recognised as an illness let alone a disability. I have had to quit work due to my sick days and when you explain to people what it is and what you have to deal with they just look at you as if your lazy. Its so infuriating

Hang in there and fight.

yes, I get the feeling people think that too. The thing is though when you are out and about and people can see you they don't see how bad it is. Obviously when you're stuck in bed no-one sees you and has no idea how difficult you find things, how you struggle just to get to the loo, how you limit your fluid intake so that you don't have to struggle to the loo etc. people just don't know and don't care. My family and closest friends are the only people that have seen me at my worst and heard me crying on the phone in pain.it is infuriating, yes, very much so! Sometimes I wish they could feel the pain just for a day and see how they feel then! Whereabouts are you Melanie? X

I'm in the Manchester area how about you. I'm having real problems with my ankles and had two x-rays to see if there are any signs of arthritis but there isn't. It takes me forever to get rid of a cold as well. I feel that something else is wrong but its like shouting at a brick wall.

hello melanie....my right ankle soreness led to foot/leg dragging 2 years ago the pain was unbearable it went up into the calf...i had physio therapy,with deep massage and heat ultrasound and stretching...it helped alot...also walking in a pool helps too...i get bronchitis about every 2 to 3 months ,so yes i think we are more prone to illnesses. 

hi shazzy...boy do i feel your pain !

Have you ever had a blood test for lupus, i have had them quite often and it always comes back as an elevated level of antibodies but not high enough to be lupus. the pain i have in both ankles are around the achilles tendon and very painful to the touch. my lower back starts on the spine then radiates sideways then down my thighs to my knees. i have had a cold now for around a month, it got quite bad over the weekend but has now gone to the fringes again, i also have a sore throat that i cannot get rid of.  i miss taking my dog for a walk and going out with my family.  sometimes i dont want to get out of bed but stay there and sleep for as long as possible. i feel like i'm becoming a burden to my husband who loves and supports me through all of this.  since i met him in '86 i saw his mum in constant pain and him looking after her especially for the last 6 years of her life.  i dont want to put him through the same. i sometimes feel so lonely and the worse thing is i cant even talk to my own mother about what i'm going through as she is more concerned with my younger sister. 

understand that totally! I am near Chester, just outside the Wirral x

I really miss taking my dog or a walk too! And nobody else bothers so she isn't getting many! I force myself sometimes and just Go slowly with my stick. I feel so sorry for her, poor Jess. She is 12 now so luckily doesn't mind walking really slow but we used to walk for hours every day-reallly miss that! X

shazzywazzywoo,

I feel your pain! I have started walking my dog again this last couple of weeks for about half an hour every day but I pay for it later on! At night my legs ache and I get cramps in them to the point I am nearly in tears when I am in bed at night and can't sleep. They say a graded exercise program is supposed to help and that we need to keep moving but for me it just means more pain!

i understand that totally! My pain gets worse under extreme stress so its obviously made worse each time you try to do something and can't. I managed to give Jess a good walk today and don't know how many more she will have. We found out Thursday night she has a tumour in her mouth that they can't do anything about and all we can do is give her palliative care now. Such a shock as she is still full of life! Or she was before we took her to the vet! The stupid woman wasn't concentrating on her and she panicked and jumped off the table. Vet said she was fine after wxamination, but her mouth was bleeding bad. We said her mouth fell open but she insisted she was ok and sent us on our way. We took her back for an op so she could have xrays and a biopsy and they rang me to tell me her jaw was broken and her gum needed stitching, right by one of the tumours! She is suffering so much now and I can't stop crying. I can see me having to go off work again. I don't want to leave her at all now and I feel that this incident will accelerate the cancer spreading. Can't believe it has happened, we go in cos we are worried about a lump and she comes out with a broken jaw! Por thing cried constantly from picking her up yesterday at 6.30 till today when we took her on one of her favourite walks, somewhere that is really quiet as I was petrified of any other dog going near her. Luckily we only met one other throughout the afternoon and she did seem to enjoy her day out, but is still crying and trying to get the wire off her jaw. My joints have been hurting so bad today, vut I din't care about my own painn

Sorry about errors, its my blinkin ipad keyboard! Anyway, try to get out as much as you can with your dog even if it is slow short walks, you never know the day. I take tramadol and co-codamol and occasionally oramorph when its keeping me in bed. Being in bed is not good though, i get the leg pains and restless leg is dreadful, but my hips keep waking me up too. I know its better not to stay in bed much but thats easier said than done when the back pain and fatigue take over. Hope you find some relief x

I am so sorry to hear about your dog! I totally sympathise because I am a huge pet lover...2 dogs, 2 guinea pigs, a lizzard and 7 cats! Our older dog is 12 nearly 13 now so I do appreciate all the time with him. I'd look at doing something about your incompetant vet though (sounds like she insisted she was ok because she didn't want the blame for anything)! I would hit the roof and definitely complain. I am sometimes stuck in bed even though I know I shouldn't, some days I just don't want to lift my head off the pillow! I take amitriptyline, pregabalin and coedine. Hope you and Jess feel better soon xxx

thank you. I don't know what to do about the vet at the mo, I am just too upset and have no fight left. Pregablin made me sleep a lot and amitriptelene! Wow you must find it difficult even waking!

i know some days I could push myself a bit further to get up earlier but its frustrating cos when you do ge up, you see things that need doing and know you can't do them, so en up getting back in bed and watching tv or using this thing. I play chess online too so I end up on that for hours. I know that if I pushed myself I could feel better. Want to try swimming it helped a few years ago, that and saunas. Have you tried saunas? Xx

I haven't tried Saunas no. I haven't tried swimming either. I'm afraid I'll hurt much worse when I get out of the water. Some days I do push myself because i try to get everything done before I feel worse again.

yes I do that too and you know you're gonna suffer for it, but the way I see it is you're gonna suffer anyway. I used to find saunas really helped a lot. I can't tolerate them at the moment cos I'm too hot most of the time anyway, but they deinitely helped. Have you been prescribed oramorph for the really bad days? 

Hi. I am a 64yr old guy who had to retire 20 years ago due to severe arthritis in my neck & spine. 8 of the vertebrae are seized & the movement is very limited. It was actually diagnosed after an operation for a frozen shoulder & the sugeon noticed my discomfort. The diagnosis was Ankylosing Spondylitis. Now, I was told, after experiencing severe pain in other joints, like knees right hip & lower back, that arthritis does not usually show up on X-Rays. It is symptom diagnosed. 6 years ago, I was at a clinic having special insoles made for my shoes, as I was getting agonising pain in my feet & ankles. Imagine my surprise when he casually informed me that I had gout! & it should have been picked up on many years ago. A few months ago, I was refered to a pain management clinic. I told them that I have been managing it for the last 20 years, what are they going to tell me that I don't already know. Anyway, I went for the assesment.........the specialist gave me a thorough exam & told me I had fibromyalgia!!!!! After 20years!!!! 

What my ramble is about, is to say, don't be discouraged if X-Rays or blood tests don't come back with positive readings. For some ailments they are not an accurate indicator of your condition. My GP says he can tell by the look on my face when I see him, that I am in real pain. Others have said the same. it shows on your face when you are struggling & in pain. 

I hope you get a fqavouable outcome. money doesn't cure it, it certainly hasn't cured me, but boy, it helps. Good luck.