Awareness: FIBROMYALGIA is more than a word and Bigger then a Diagnosis!

Hi Lindsey,

Check my post up further on this page you will see Welfare Rights Department mentioned where I was speaking to Shelagh.

A better discription is here which I wrote:

Advice on Applying for DLA (Disability Living Allowance)

https://patient.info/forums/discuss/advice-on-applying-for-dla-disability-living-allowance--313511

The PIP form is basically the same, apart from a few questions that differ. I think I have a PIP form here somewhere, I will look it out.

As for finding my other posts there is many, and my posts are usually very long with a lot of content. I'll have a look around and see what I can find.

Regards,

Les.

Hi Dean,

Well, Dean your story doesn't surprise me at all. Fibromyalgia is either diagnosed by a Neurologist or a Rheumatologist. The problems we have these days is, more so with Fibromyalgia is getting it diagnosed correctly. Both of the aforementioned are quite capable of diagnosing the disorder, but what throws many specialists 'off-track' is the fact, certain symptoms could mean some other prognosis, hence the diagnosis ends up being wrong. I really need to put up some links to specific websites, showing what various pains are, most people think pain is just pain, that for a start is wrong, imagine treating everyone who had pain with the wrong type of painkiller, rather making it better it could becoming worse, or the painkillers you take the more your body becomes immune to them, again the wrong way of trying to remove pain.

What I can do is write a large article, not just any old article, but one that explains things easier for people to understand. It is so obvious that ATOS has no idea when it comes to Fibromyalgia, apart from it is back pain! How to lose a case before you start!

Dean, your more than welcome on these forums - there is many people just like yourself on here. They could tell you there stories and how they cope from day to day. I noticed it attracted a lot of attention, hence why I have stayed and answered most questions, think I missed a few, but they will be answered like the rest.

Pain Management Clinics to me are basically a waste of time, I spent 12 months going back and forth to one. I have been on Tramadol, at first only 50mg before bed, basically it was for killing pain in my neck, shoulder and back.

I was gradually upped to 150mg, however this dose was split with 50mg in the morning and 100mg at night. This is when the problems started, I kept feeling nauseous after taking 100mg of tramadol at bedtime. So, I contacted my doctor to ask if I could split the 100mg to around half the time in the day, well this stopped the nauseous feeling, but I had pain come pack in my spine at nights, keeping me awake again. So, then I was given Amitriptyline before bed and told to take Paracetamol with the Tramadol doses at night and in the morning. This now was getting out of hand, and it started causing Epileptic seizures to become uncontrolled!

At this point I was referred to the Pain Management Clinic to remove the Tramadol and Amitriptyline.

They tried putting me on Gabapentin, these are okay for peripheral neuropathic pain, but no where near as strong as Tramadol and Amitriptyline, which work together. Apart from that, the Gabapentin also caused diarrhea, from my IBS!! Normally, they wouldn't they would have the opposite effect and cause constipation.

Nothing with me is easy!! I tried Gabapentin for nearly 2 weeks, which played hell with my stomach operations, so it was all swapped back.

So, there I was back to square one!! Again.... Tramadol, as you probably know is well known for causing sleep at any time, there was me with very ominous side-effects.

At this point, the Pain Management Clinic had done nothing, and were not going to change any other medication because I am on 11 others a day at different doses. So, my own doctor had an idea - take me off the 150mg a day (bearing in mind this medication can cause seizures), and up the dosage to 200mg of Tramadol (it would of been 75mg x 2, but they are not available in the UK), but put me on SR (Slow-Release).

So, now each morning 100mg of Tramadol SR, 2 x Paracetamol and then at nights 100mg of Tramadol SR, 2 x Paracetamol and 2 x Amitriptyline. This keeps my pain level low enough throughout the day, and aids sleep at night - the Slow Release Tramadol keeps the same level 24 hrs a day, which I am happy with.

Many people say Tramadol are addictive, I've never had a problem to be honest, people say I should be wary on a Class drug, but if the slow release is enough to keep pain at bay, then I don't mind. The Paracetamol work well with Tramadol which is why I am on them, the only time I have to take 2 additional Paracetamol is before Physiotherapy, so they can stretch my leg muscles in to the correct way, without causing me too much pain. That is okay, until I get a dam cramp in my calf muscles, then that is REAL pain!! lol

Thank you Dean, for bringing your story to my attention - I can only imagine what you must have been through in the past 10 years, hopefully we will find some way of making this disorder more aware to not just families, but the public as well.

Regards,

Les.

That's interesting Les, Tramadol make me I'll, I take Dihydrocodiene with Paracetamol, Amytriptyline 50mg at night, Pregabalin 100mg at night and Butrans patches. The Gabapentin made me really ill, my blood pressure plummeted one day at work, I was so ill I had to let somebody drive my car home, nobody drives my little car, she's precious. With regard to addiction to painkillers, I've been told they aren't addictive if they are taken as painkillers and not for recreation. I think it was one of the drug team I worked with who told me that, whether it's true or not I can stop taking them if I don't need them and don't get any side effects. I've been referred to the Pain Clinic, I used to manage their clinics so know the team well, the plan being to reduce the amount of painkillers I take, we'll see. 

That is exactly my problem Shelagh, changing any of my medications can have major effects on me. When I said to my Doctor that Gabapentin caused Diarrhea, she said that was not possible - I said well that's what I thought, until I read in rare cases it does have the opposite effect, so it was possible but classed as 'rare' and I'm one of those rare cases! Typical...

Pregabalin also has the same effect with me, because I was supposed to be taking Gabapentin and Pregabalin, both work better with Epilepsy, but if your body rejects them, I had no choice but to stay on Tramadol.

You mentioned Dihydrocodeine, well guess what I cannot take any medication with with codeine in, it doesn't cause Diarrhea, but I end up with severe constipation.

Tramadol are brilliant as a painkiller, I never take over the dose I am supposed to prescribed anyway, besides for me to do that would be impossible. My wife has to sort all my medications out, I cannot be trusted with which tablets are to be taken and when. It doesn't help when I have memory problems, I seen my Phychologist this morning, and now they are arranging a meeting with me, my Neurologist (whom is the President of British Neurology Dr. Geraint Fuller), he does NHS and Private patients.and my Pain Management Consultant, because of memory issues whether these are medical related or I have some other underlying problem, so I am hoping it's just medication related.

I have have many people that come on here actually asking how to get hold of Tramadol for recreational purposes, because their doctor prescribed them with a box of 100, and they took them all in a week! That to me is bad.... Course people phone their doctors asking for a repeat then cannot understand why they are turned down.

Trouble is we all differ, so tablets work with some people and not others, it's like Fibromyalgia, there are many variations of it, which makes it confusing.

I could tell you a medical term of one such disorder that thousands of people suffer from, and they would be 'shocked' beyond belief. In some cases it is part of Fibromyalgia, yet it is rarely associated with it.

Regards,

Les.

Hi erykah71,

You should have found me first - I have a huge wealth of knowledge! And, filling those forms in, I helped 5 people on these forums this year, all 5 ended up with Full PIP on both components and none of them had to appeal, the periods varied from 3 to 10 years, but this part relies heavily on your disorder and whether or not it is progressive.

Fibromyalgia is not a 'progressive' disorder as such,  but it can feel that way to the patient, if asked they would probably say 'yes'.

To a person, say in the street, looked at a person with early stages of Fibromyalgia they would not even think there was anything wrong at all.

I had to laugh at this part "illness all in your head" - if I could post some links, you would find out some very interesting facts by a Consultant Neurologist Specialist Dr. Jon Stone. He has some amazing articles online, that if you played I have watched, you would understand more about that statement, to ATOS and their so-called Health Assessors they would be totally shocked, if they were shown the video - it is a true reflection of "Pain", but not how our Government depicts pain, at all.

There is much more I could say, I think what I will do is put up a page of various links not just to interesting documents, but much more. Alan, the moderator I still need to give him a load of information that would benefit many people on this website.

Regards,

Les.

Hi Les63

I have been reading a lot of your blogs on this site and I wondered if you could kindly help me fill in my husband's PIP form?

Hi Lyn15036 Your local Cab would help you to fill in the form my husband filled mine in for me. We spent 2 hours on it going through each section at a time and refering to the help booklet each time.for each section. Hope you get some help with it. take care