Dealing with Fibromyalgia and weather I'm eligible for PIP

Bones, joints and muscles
1

Hi Guys..

I'm 20 years old and have been diagnosed with Fibromyalgia 4 months ago. I also have problems with my nerves with the doctors have not yet been able to tell me what the problem is..

I had an accident in Auguest 2014. I crashed a Go-kart in to a wall at 60mph. It was not fun! I now have numb legs ad get shooting pain through my nerves from my spine in my lower back and legs like I'm being stabbed but as quick as an electric shock. It painful to walk or to even move. Does anyone know what this could be?  

I am currently on Gabapentin, Amitriptyline and dihydrocodeine. They do help with the pain but my body gets used to the mediation and I'm highly addicted to them. I can't have anymore medication. I urge anyone who is on medication to take breaks and try not to go to high with them.

I don't really have any knowledge of how to deal with fibromyalgia as well as my nerve pain. Does anyone have any advice or ways of dealing with it? 

With my tablets they make me constipated and i recently went to see a dietitian who suggested i start a new diet. I currently work 16 hours a week and earn 100. I have just left college so I don't have income support anymore to help me out. The 100 pound I get a week, 3/4 of that goes on my living expensis as I support myself. 

My new diet is quite expensive and I don't have the money to pay for it all.. I was told I could claim PIP whilst working to help with stuff like this. The only problem is I don't know how to start the process, can anyone help please?

I also don't know weather i'll be entitled to it as i work. I also have to pay for my medication which is 8.60 per item and I have 6 items a week. I have no idea how I'm going to pay for it all and still survive living on my own with no parents. 

I can't go out and get a full time job as moving helps my pain but too much and I physically can't walk.

Can anyone help me with this or have some advice?

I also have really bad migrains and my synopsis flaire up. I had one the other day from about 5 in the afternoon on the friday until I woke up on the Sunday morning for work. I had to take the day of work on the Saturday as it was that bad. Sometimes i end up ebing sick, and i feel better afterwards. But I take medication for it, I sleep and drink lots of water. and neitehr of them help. Does anyone else with fibromyalgia suffer with this? And if so how do you deal with it?

I don't have anyone to talk to about this as im a young person with these ilnesses, So im turning to you guys to help me if you would..   

Anything would be appreciated. 

Many Thanks.

Kayleigh rolleyes 

2

I have just applied for PIP you just ring the number which you can find on the internet you will need your national insurance number doctors details and bank details they will send your form through the post I then spoke to Equal lives they will help you fill out your form they told me to get as much information as possible from any professional you have seen I'm going to write to each medical professional and ask for written reports this will strengthen your case apparently they don't always contact your GP and therefore refuse you it's also important to fill out your form basing your answers on when you are at your worst hope this helps don't think it's a quick progress will keep you updated

3

Just to let you know you can get PIPs even when you are working. You can look up the descriptors for what questions they will ask you online. Best of luck. That is so tough when you are so young.

4

Thank you so much..

This has been a massive help. What do I put in my search bar to find the number?

And how do I contact equal lives as i've never heard of them. I only live in a little town called Winsford in Cheshire. I'm not sure if we have equal lives about. 

Would you suggest that I get a writen letter from the doctor and all my medical proffesionals and send it with the form I fill out?

Thank you so much Tina, You've helped loads. 

Kayleigh  

5

And please do keep me updated, anything you can tell me with be of tremendous help. 

 

6

I live in Norfolk so not sure if you have equal life's but I'm sure it's a nationwide facility they provide one to one help with filling out your form. If you type PIP benefit into your search engine you should get the information you need also search equal lives and the area you live in and that will give you there details hope this helps if not ring your local job centre and ask to see a employment advisor they will be able to give you all the advise and numbers you need

7

Hi darling I think you need to ask your GP to refer you to a neurologist. You may have suffered a degree of concussion or whiplash as a result of your accident. Given your age too you may have POTS. Try not to worry it's nothing to worry about its actually very common but this could account for your fibromyalgia and sickness. It doesn't involve an operation or anything fightening just a few tests like a 24 hour heart monitor which you can take home and use at home. He will then explain everything to you and give you advice and if necessary medication to help stop the sickness. It's really not frightening so please see your GP ASAP and in the mean time drink lots of water just plain water not Coke or sports drinks as they could make you worse. Good luck, I'm sure you will soon feel a lot better so try NOT to worry either as that will make your possible POTS worse. 🍀🍀🍀💞

8

Thanks Tina, I shall try find the numbers for both PIP and equal rights. 

You've been a masive help..I hope you get your claim and the help you need. 

Thanks again

9

Hi Kayleigh, I have had fibro for 13 years and in the early years I used to get the stabbing electric shock feelings regularly. Fortunately I don't have them any more. The problem with fibro is that you will constantly get different pains in different parts of your body. I also have polymyalgia which causes even worse pain and I can't always tell which illness is causing which pain. I have just applied for pip after all these years but this is more due to needing new knees due to severe arthritis. I do think that it's unfair that you have to pay for your prescriptions when you're on such a low wage. Are you not entitled to working tax credit?

10

I am from US. Try LYRICA stronger than neurotin for nerve pain. Works for both nerve and pain. You need stronger pain meds in my opinion oxicodone. Amatriptalyne is so so, but makes you tired probably. Muscle relaxers could help at bedtime. Not a fan of benosos nut you may want to try clonazapam which also helps with nerve pain. I have been in a lot of pain or I wouldn't suggest so much. You have more than Fibro going on probably from the accident. Best of luck to you. You can email 📧 if you like. I hope they checked you out really good after accident.

11

Hi Kayleigh I'm sorry to hear about your accident and how you have now been suffering. As far as prescription meds go, you can set up a monthly direct debit and pay around £11 per month for as many meds you may need. Just go on line and fill out the form. Your go can provide one or pharmacy or you can make a phone call. You should have been told about this. Also please do not even think about asking for highly addictive drugs like oxycodone. There are many pain killers less dangerous that your go can prescribe for you if required. I hope this helps and wish you well x

12

Thank you, I've had a look online and it says I can get one from my pharmacy and it only cost about £30 a month so thank you so much for that. You've literally saved my life smile 

Unfortunatly I wasn't told about this as I was on income support as I was at college so I didn't need to pay at the time. 

I'm already addicted to the stuff I'm on and I suffer really bad with the withdrawals, So I dearnt ask for even stronger ones.. Sometimes I don't know whats worse, the pain or the withdrawals. 

This has helped me alot, so thank you so much. 

Many thanks. Wish you well too.. x

13

Thank you.. 

I'm glad I can still claime. Where could I find those questions.. Do I just look up 'questions PIP will ask me'? Something like that. I'm quite useless at this, I don't have any parents to help me either. It's quite scary. 

It is tough when your young but it's tough on everyone going through this. 

Wish you well smile 

Thank you 

14

Hi, 

I've already been to see a neurologist but I haven't heard anything back from them. Evbery time I call up, they just tell me someone will be in contact with me. My GP has even wrote to them a few times and tried calling. 

Do you mind me asking what is POTS? I hope one day someone will get to the bottom of this, I think whats even worse than this ilness is not knowing what's causing it and how we can get better. I will ask my GP about it though, thank you.. 

Thank you, and I hope so too. 

Wish you well x

15

Hi Deborah, 

I'm glad you don't get the shooting pains anymore, I woldn't wish them on anyone. I'm having them quite bad today in my lower back. 

If you don't mind me aksing, what is polymyalgia? I feel ever so sorry for you.. It sounds painful. It's horrible when you don't understand your pain, what's causing it and which diagnosis it actually is. 

Arthritis too, I really don't know how you cope. I hope you get your new knees and if I was rich I'd pay for you knees smile 

I've never really searched anything about working tax credits to be completly honest. I didn't think I was entitled to them but I shall look in to it.. Thank you. 

Wish you well 

16

Hi,

I've seen a few people mention Lyrica that have fibromalgia so I shall do a bit of reasearch and ask my GP about them. 

the only problem with stronger medication is that I'm already addicted to the stuff I'm on at the minute and I don't really want to get anything stronger as it will be harder to get off them. 

My medication used to make me tired but now it gives me energy, keeps me awake. 

Do you have any muscle relaxers in mind? I will also ask my GP about clonazapam. 

It's not nice when your in a lot of pain and it sounds to me like you've be in a great amount of pain. 

I didn't actually get checked out after my accident. I was on holiday in Lanzarote and after the accident I got up and walked away from it. I had my accident the day we were coming home, we had a night timeflight. It was coming home on the plane when I started to notice the pain and after I got back home it just got worse and worse. 

Thank you for you advice, I really appreciate it. It's nice to talk to people who know what I'm going through and can understand. Where as my friends and family don't think I'm in that much pain becuase I still get on with everything. I still go to work 2 days a week and it's pretty much manual labour. I still get up and do things. I don't like to do nothing. I've always been active so as far as im concerened thats the way its going to stay. 

The days I stop doing thinks Is the day fibromalgia has won! 

Wish you well 

17

Hey kayleigh:

I did not know that you got into a bad accident crashing your go-kart.  I would think that you may have problems in neck, shoulder, back and spine areas not counting the brain.  If you had a concussion, then it can be more serious.  After the crash, did you go to the hospital for tests?  I think that is an important question to ask.  If not, how did you take care of yourself?  I am unable to elaborate further as I don't know how bad it is.  All I can do is to console you and I do feel bad that this happened to you.  I wish I could say more but at this time, I just have to say is to check it out as soon as you can.  It will make you feel more at peace to know what is going on.  Take care and overall be well.  I think I said this so many times to many other's.

mel

18

Hi Kayleigh

I have just checked the nhs website for you and the charges are £29.10 for 3 months or £104.00 for 1 year which can be paid over 10 monthly instalments. I hope this helps x

19

Hi kayleigh:

While I was reading these posts, I thought I would intervene here as you did answer my question.  It's too bad that you didn't have the time to check out the accident that you experienced.  Being away and having to catch a plane was what was on your mind.  I bet getting into the crash, it probably stunned you but not being in pain right away.  It didn't take long though.  What was and is now, you do recognize how something like this can worsen.  I still think you should check it out.  It still was something you got hurt in the accident.  I really hope that  you would consider this. How medicine works in the UK is quite different than the USA.  We may not have socialized medicine but who know what can change?  I know the insurance companies and many of them who are in competition with each other don't deliver the best coverage unless you get one that costs more and still there are certain flaws in it.  Since I am on medicare, that is governed by the Federal Government.  Still there are co-pays, drug costs and tests you have to pay a percentage.  But it is still a means to be protected and is required.  One thing in your Country is that it is all provided to you but I imagine there are very long waits until you get an appointment with your doctor.  At least the doctors there can provide good patient care as they probably don't have all the insurance problems as here.  I don't really know how your system works.  I think the point is that you have to become your own advocate.  Here, we have to research things, read patient reviews and have a good doctor.  I hear so much about holistic type of care which means of course by natural means.  Accupuncture, warm water, meditation, self hypnosis, massage, and whatever else can help but you have to try them to see it yourself.  I need to cut this short as like I said early on, I crashed the party.  grin  smile  Take care and do what you have to in order to feel better and don't over do it. 

mel

20

Hi Gizmo:

Thought that I write you.  You being in the UK and me being in the States, we have different types of medical care.  I was wondering what PIP means and what that would be considered compared to our insurance?   I'm just curious. Looking through these posts, I notice that prescription drugs are not as expensive as in the States.  The Pharma here charge big bucks and newer medications are almost out of the range of being affordable. Big Pharmas make lots of new drugs, advertised on TV and patients who watch this, has the info asking your doctor to prescribe them.  I am unable to afford the new drugs.  I go to any clinical trials that I can see if these drugs do indeed work.  Qualifications are pretty strict and that is just to get the first appointment.  As you know a very large questionaire is filled out so these trials can check you out.  Especially if you are taking too much meds, wrong kind, conflicts and using street drugs of course.  That slows the process down to a few that will qualify.  You don't get paid as much as it only takes care of transportation and having a burger or two.  Hope yoou feel better and stay well.

mel