Wow... Screwed for Life...

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Wow... Screwed for Life...

Postby animeemo3 » Mon Jul 22, 2013 3:23 pm

just got back from hospital about my feet and am stunned. basically, the lumps are muscle, and if i don't want it to get any worse, i must not walk on it. what makes it even worse, is the fact its on both feet, so basically i cannot walk at all! the doc explained it as if it was a bodybuilder lifting weights and his muscles get bigger. each time i walk, i tear the muscle lump, and it repairs itself bigger. he said there wasn't anything surgically or otherwise they could do :cry: now, if i want to go out (which i never do anyway other than for hospital) i have to use a wheelchair. i have never used one before, arms are pretty weak so i dont think i can self propel, and my OH already said he doesn't really want to be seen out with me, so i cant rely on him for propulsion :cry: tis a hermits life for me then lol
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Re: Wow... Screwed for Life...

Postby Panda58 » Mon Jul 22, 2013 3:34 pm

Perhaps the oh should think what would you do if it was him and how he would feel if you said you were not prepared to be seen with him in a wheel chair xxx
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Re: Wow... Screwed for Life...

Postby mum_rocks » Mon Jul 22, 2013 3:37 pm

Dont get down about it. Get urself a motorised scooter and jazz it up to ur taste.

I sympathise about ur OH as mine said the same n really upset me when OH said it :(

It doesnt have to be a hermits life just research ur cabs around u and contact ur local council to see if there is a Handicab service (cheaper than taxis).

Dont let this horrid condition get u down

Gentle hugs xx
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Re: Wow... Screwed for Life...

Postby DRM » Mon Jul 22, 2013 3:41 pm

So sorry to hear that. I'm sure it's hard news to process. You should think about getting a second opinion. I find some docs much more helpful than others. Best wishes x
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Re: Wow... Screwed for Life...

Postby animeemo3 » Mon Jul 22, 2013 3:46 pm

i'm going to get a second opinion from my gp (he's the only person i can see atm) see if theres anything at all they can do. i'd even be willing to lose some movement if it meant it wouldn't keep growing! i'd like to get cabs, but its so expensive because i'm pretty far away from my hospital and my visits are fairly frequent. been trying to get dla/pip to help with the costs but they keep saying no. and i'm pretty sure i wouldn't be able to get a scooter, to be honest i'm not sure i would even want to use one, i get funny looks for having a crutch as it is!
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Re: Wow... Screwed for Life...

Postby *Lisa* » Mon Jul 22, 2013 3:55 pm

Hi,

Im wondering if reflexology may be of help? they can massage the muscle and help relax it a bit? just a thought off hand.
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Wow... Screwed for Life...

Postby Lizbet40 » Mon Jul 22, 2013 4:43 pm

I suffer from this problem it comes and goes and is not like yourself there all the time it is as I describe it like walking on marbles and is excruciatingly painful I really feel for you. I have not been to see a specialist as yet but I will be requesting that I see one the next visit to the doctors. As for your partner I feel it could be that he would be really embarrassed pushing you in a wheelchair so as suggested I would get yourself a motorised scooter then you will be free to come and go without having to rely on someone. I would also suggest that since you have been told not to walk as this will mean you damage your feet, get yourself a claim form for PIP and check out the benefits and work web site as there is help there to help you fill in your form. There are also Facebook pages like fight back and people versus the government and ATOS who are only to willing to help and there you will also find people posting useful information to help you through the process. Good luck!!!
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Re: Wow... Screwed for Life...

Postby Helenkyates » Mon Jul 22, 2013 4:50 pm

You should ask about Botox injections. I could have those for my TMJ disorder.
So so sorry to hear it want better news.
Keep your chin up. If u ever want to rant feel free to add me in Facebook (shoequeenuk@hotmail.co.uk) It's nice to feel someone will listen and not judge xxxx
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Re: Wow... Screwed for Life...

Postby animeemo3 » Mon Jul 22, 2013 4:54 pm

i actually phoned up to start a claim for pip a few days ago, still waiting for the forms. i've tried dla in the past, but always got turned down. i'm hoping i have a better chance now i have this to tell them! *fingers crossed* i understand why my OH doesn't want to push me about, or even be seen with me. i'm only 20 and he's 23, and we both look a little different to the average 20somethings, and a wheelchair/scooter would make it worse. not point in having a chair/scooter anyway, i live on the second floor , no way of getting chair/scooter up the stairs, and i sure as heck wont leave it downstairs, not in a shared house! lol
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Re: Wow... Screwed for Life...

Postby padders » Mon Jul 22, 2013 5:51 pm

I have this among other things!! I have a electric wheelchair and it has given me a new lease in life. Before I got this I was in a self propelled one so was harder to get out but my husband would push me and the whole family would not once did they refuse or was embarrassed. I really do feel for you as your partner is not helping the matter and I don't understand why he is being like this!! Age does not matter he should be happy to help you not embarrassed. If you have a letter from the Dr telling you not to walk then you should be able to get DLA or whatever it is called now and out of that you can get a scooter or wheelchair from it. You could lock it up or get a light folding one that can be carried upstairs. I do feel very sorry for you but please please don't give up get a scooter it really will change your life x
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Re: Wow... Screwed for Life...

Postby lolo73 » Mon Jul 22, 2013 7:19 pm

If your house is rented then maybe approach the council or housing group for more suitable accommodation, it can't be easy living upstairs in your condition. Secondly ask you hospital to send out the hospital transport service to help you with your journeys, it sounds perfectly reasonable in your case, or claim back taxi costs through the hospital finance service (think it is for people on certain low income benefits). Lastly, get a 2nd opinion it sounds like a totally unrealistic thing for the consultant to say. x :(
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Re: Wow... Screwed for Life...

Postby frances A » Mon Jul 22, 2013 7:53 pm

perhaps someone could solve a problem for me ? about 5 mths ago my legs & feet swelled up from knees down- red hot burning, itching, skin feels bone dry , is red & feels rough & scaly- my feet feel as tho someone is wringing them, it hurts to walkwith or without shoes which are agony to put on- not much better in bed ! told dr- 'oh, fluid retention' no solution !
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Re: Wow... Screwed for Life...

Postby Iceskatemum » Tue Jul 23, 2013 12:44 am

So sorry to hear your Dx but at least you now know whats up and can do something else to help cope with the pain and or help get you out adn about. Given the DX you should be eligible for an electric wheelchair (talk to your GP about OT referrals etc) I would also give the local PIP office a ring and see about fast tracking your form .
Not sure of the PIP guidance but would think that given you have a chronic condition that effects your mobility plus at the moment you do have any means of modifying your movement you should be eligible for something (although when has that ever seemed to matter :-) ) .
When I applied for my DLa I used the benefit & work web site . I found it brilliant for help in filling out the form and managed to get HRM & MRC without needing a medical . I know they have updated things recently to take into consideration the new benefits requirement.

Good luck with everything inc your boyfriend, sometimes they tend to say things without thinking and so would give him a while to see how he digests your news, here's hoping he comes around a bit .

Good luck and let hope you are able to get some support , it such early days in your dx.
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Re: Wow... Screwed for Life...

Postby E-Bunny » Mon Jul 29, 2013 1:32 pm

Hi,

When I walk it feels as though there is a round object ( marble, or stone ) on the bottom of my foot, just before my toes ! I cant see any lump, but this feeling is always there and can get very painful if I have to walk any distance. Is this the same as you are having ? As I said, I cannot see any lump there, and this has been a problem for about 3 months now =(.

Is this a Fibro thing ? Should I be worried about it ? I am hesitant to mention it to my GP as she will just tell me its an epileptic seizure or the drugs I am on for epilepsy lmao.. She even blames my excruciating flare ups as seizures !? which is why I am pressing to see a specialist o.O

Sorry about the questions, I am new to this and not sure what is / isn't fibro

Tina x
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Re: Wow... Screwed for Life...

Postby pamh » Sun Aug 18, 2013 7:50 pm

So sorry to hear this. I have recently developed plantar faciitis and carpal tunnel on top of everything else, so I understand some of what you are experiencing.

Cant offer much advice, just empathy and hugs xx
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