Desperate prescription & diagnosis help needed

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Desperate prescription & diagnosis help needed

Postby nomad » Sat Mar 01, 2014 1:25 am

I've spent the last few years trying to get to grips with my condition. I have chronic fatigue, breathing difficulties, muscle tension, 'frazzled' nerves and acute anxiety. However, all the other symptons pale in comparison to the muscle stiffness and 'nerves on fire' . Not a moment passes when I'm not acutely aware of the state of my body. It limits my ability to work and be social.

The doctors have finally refereed me to a Neurologist, and I've had one appointment, and a couple of tests. So far nothing. The nuero has suggested anxiety as the possible cause, but he is still investigating. At present he has recommended amitripyline. I'm not keen on this.

I've asked for stronger muscle relaxants to use periodically to relive some of the cramping, However, GP suggests we wait till Neurologist finishes his investigations, which could take another five months,

I'm desperate for muscle spasm relief, I've read up on the options such as Pregabalin, Gabapentin and Baclofen. But also on benzo's such as Klonopin and Xanax. I'm at the point where I'm willing to go private, I can barely afford this,

Could someone recommend an affordable private route, or how I can go about persuading my GP to prescribe. She's a lovely woman, but I'm sure there's a strong element of doubt in her as I'm outwardly passive, and therefore don't come across 'screaming in pain' enough for her.

I really could do with some advice .
Last edited by nomad on Sun Mar 02, 2014 11:04 am, edited 1 time in total.
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Re: Desperate prescription & diagnosis help needed

Postby belfastbap » Sat Mar 01, 2014 2:03 am

Hi I was just reading your article am on gabapentine 1800mg a day fentanyl patches 12mg woren over three days but I were two off them I also take amitriptyline 50mg at nite to help me cope with the spasms in my legs also I was prescribed diazepam 5mg 3times a day as a muscle relaxant it dose help I was too have botox done on my face today cause I have a lot off nerve damage on my left side off my face but had too have a biopsy done on a lump that was on the inside off my lips , you can refer yourself too chronic pain or go thorough your doctor iv been very lucky as sent them a email explaining what id been thorough in surgery in maximol facial surgery I was seen within 8weeks now I go every 3months there is no quick fix for what you or myself have fibromyalgia is so depressing too have and in my experience I never have 2 days the same I dont get flare ups because I have it all over my body you will get ease once u get the proper medication to maintain it, u will at least get some ease . Xx susan
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Re: Desperate prescription & diagnosis help needed

Postby zappa20 » Sat Mar 01, 2014 3:50 am

nomad wrote:
The doctors have finally refereed me to a Neurologist, and I've had one appointment, and a couple of tests. So far nothing. The nuero has suggested anxiety as the possible cause, but he is still investigating. At present he has recommended amitripyline. I'm not keen on this.
.


Why not try the Amitryptiline ? Admittedly it can cause some side effects but thousands of people have found it excellent for toning down the burning and electric shock you've described. if you can get a bit of improvement in the severity of this pain, you might not be so permanently tense or anxious so to speak, in anticipation of when the next wave of burning pain is going to arrive or start up . With the result your muscles aren't so tense and painful.

I found the daily muscle stretching exercises and light exercise plan recommended by the Fibro nurses and phsios were excellent in alleviating tense tight sore muscles, although it takes a little time.
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Re: Desperate prescription & diagnosis help needed

Postby nomad » Sat Mar 01, 2014 4:24 am

The reason I turned down the Amitryptiline was because I was on paroxetine previously for three years for the anxiety. And whilst it helped enormously through a particularly rough patch it really changed the way I related to people. It numbed me emotionally, and whilst I was on it I struggled to maintain empathetic relationships. It also increased the hyper element, and for the first time in my life I found myself in a huge amount of debt which I'm still dealing with. The other aspect was anger, normally I'm inhibited and restrained, but on paroxetine there were (verbal) incidents, which had (long-term) consequences.

I came of Paroxetine, 4 months ago, and I'm just now regaining my self. And so much more of warmer, clearer empathetic individual for it. Hence the idea of going back on AD's terrifies me.

Having said all that, in the last few days I have reconsidered it, but only if I've exhausted all other routes. And only for the very short term. The other issue I have with Amitryptiline is the commonly reported effect of brain fog and over-sedation. Mental clarity is essential, and I'm fatigued as it is, and simply cannot afford to lose the precious little energy I have.
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Re: Desperate prescription & diagnosis help needed

Postby Jeany » Sat Mar 01, 2014 9:03 am

I can relate to what you are saying about the anti depressants, as I took them for years and absolutely hate the side affects. They made me nasty and also numb to the extent that I could not grieve for my mum when she died. Then years later while on the highest dose of Citalapram and the GP was trying to wean me off so I could try another AD I experienced dreadful withdrawal symptoms. I was hallucinating and having really bad nightmares that frightened me to death. I try to rely on pain killers now, and stay away from medication that affects my state of mind.

I have always been a very anxious nervous person, and I was diagnosed with CFS and chronic myalgia in 2012. I think this was a result of years of constant stress both at home and work, and my inhability to relax.

I would urge you to stop using cannabis, because I have seen what it can do to people and it will just mess with your head. I myself decided when I was diagnosed to lead as healthy a lifestyle as I possibly could, and gave up alcohol and cigarettes as they are just poison.

I don't know where you live, but I have the ME/CFS specialist team at Seacroft Hospital Leeds working with me, which includes doctors, nurses, dieticians, physotherapist and a whole lot more. Ask your GP about a referal to either your nearest CFS/ME team or pain clinic, and INSIST that she gives you better pain relief immediately. Tell her you can not stand the pain anymore and need more help..

Keep in touch with us all on here, and good luck x
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Re: Desperate prescription & diagnosis help needed

Postby libbiek30 » Sat Mar 01, 2014 9:15 am

Hi really feel for u but hopefully u can get it under control. I am on amiltriptiline but only a small does it really helps me sleep and relaxes my muscles I am also on serterline for anxiety. Both r small doses so not bad side effects. Yes I get brain fog but doesn't every ome with fibro. I would stay away from canabis because it makes u very paranoid and has long term effects. The best thing I did was have acupuncture, I had it on nhs ask ur gp to refer u. It really helped my pain, migrains and anxiety. Now I can cope and actually enjoy life yes I still get bad days but not every day. Gud luc :-D
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Re: Desperate prescription & diagnosis help needed

Postby Keri2181 » Sat Mar 01, 2014 10:49 am

Hiya I'm on methocarbamol 750mg. They are muscle relaxants and work wonders for me. I'm also on fentanyl patch 25 micrograms and pregabalin, naproxen and sertraline. I'd suggest telling ur doctor u need something for immediate relief. The other name is Robaxin
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Re: Desperate prescription & diagnosis help needed

Postby nomad » Sat Mar 01, 2014 12:20 pm

Keri2181 wrote:Hiya I'm on methocarbamol 750mg. They are muscle relaxants and work wonders for me. I'm also on fentanyl patch 25 micrograms and pregabalin, naproxen and sertraline. I'd suggest telling ur doctor u need something for immediate relief. The other name is Robaxin


Thanks for the suggestions. I like the look of methocarbamol and also pregabalin. I've booked another appointment, but I come so calm, and I'm not pushy, that she'll really struggle to see the severity of the situation.

It's virtually impossible to find anyone who understands what you're going through. It's a debilitating 'invisible' illness and it leaves very little room for having to cope with other peoples opinion of you.
Last edited by nomad on Sun Mar 02, 2014 11:08 am, edited 1 time in total.
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Re: Desperate prescription & diagnosis help needed

Postby FluppyPuffy » Sat Mar 01, 2014 1:37 pm

:welcome: to the forum nomad :cow-wave: :cow-wave: :cow-wave:

I've jiffled you over into here with this being your intro topic as it's a more suitable board.

Wrt to approaching your GP about things, I've always found that being direct, yet still respectful, explaining what I have been researching along with some paper info, then asking about its suitability for me to try has stood me in good stead. The paper info I tend to take with me consists of details of what I have been looking into, obtained from reliable sources, along with my symptoms and how I feel I might benefit from trying something out. As my queries are well balanced, and I'm also asking my GP for their thoughts, it tends to be well received as I'm not coming across as trying to teach them how to suck eggs.

This approach can be used to help with other issues as well. For getting things going iro a dx, printing up info about the conditions/problems you feel may be behind what you experience, as well as compiling a list of your specific symptoms, then using this info to cross reference/highlight why you believe this could what you are dealing with can be of help.

I can understand why you are reluctant to start Amitriptyline due to it's well reported side issues, however you do need to bear in mind that such issues don't affect everyone in the same way, and in quite a few cases, a bit of twiddling around with the time that it is taken can help ease the foggyness and zombification. There is also a sister~med to Amitriptyline, Nortriptyline, which works in the same way and on the same issues. Nortriptyline is said to have fewer side effects and be better tolerated than Amitriptyline, whilst being effective (for some anyway) for sleep and pain problems. The dosages used for both Amis and Noris tends to be much lower when used for sleep and pain issues compared to the dosages used for depression etc.

I also think you need to stop using the cannabis. As well as the physical and psychological issues it can stir up, there is also the legal aspect to consider should you be caught using it. For possession, the maximum penalty for possession is up to 5 years imprisonment on the escalation penalty system. For a first offence, an oral cannabis warning tends to be given by a police officer, either on the street or at a police station. For a second offence, a Penalty Notice for Disorder (PND) for cannabis possession will be issued. PNDs are tickets that police officers can issue at the scene of an incident or in custody, and carry an on~the~spot fine of £80. For a third offence, further action will be considered. This could include release without charge, caution, conditional caution, or prosecution. For any further offences, arrest is the likely result.

For an affordable private route, the best thing would be to contact some private specialists to enquire about their costs, and see if there may be some movement in them. Also, some specialists work for NHS as well as privately, so asking if you can initially be seen privately, then be transferred into their care on the NHS might be another option to consider.
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Re: Desperate prescription & diagnosis help needed

Postby nomad » Sat Mar 01, 2014 2:37 pm

FluppyPuffy wrote:
Wrt to approaching your GP about things, I've always found that being direct, yet still respectful, explaining what I have been researching along with some paper info, then asking about its suitability for me to try has stood me in good stead. The paper info I tend to take with me consists of details of what I have been looking into, obtained from reliable sources, along with my symptoms and how I feel I might benefit from trying something out. As my queries are well balanced, and I'm also asking my GP for their thoughts, it tends to be well received as I'm not coming across as trying to teach them how to suck eggs.

This approach can be used to help with other issues as well. For getting things going iro a dx, printing up info about the conditions/problems you feel may be behind what you experience, as well as compiling a list of your specific symptoms, then using this info to cross reference/highlight why you believe this could what you are dealing with can be of help.


Excellent this is really useful, thank you. I'll start collating information and doing a write-up. I do like this approach as its not belittling the GP and making them part of the process. As for reliable sources I guess I can trawl pubmed, but is there anything else I can look at.


FluppyPuffy wrote:
For an affordable private route, the best thing would be to contact some private specialists to enquire about their costs, and see if there may be some movement in them. Also, some specialists work for NHS as well as privately, so asking if you can initially be seen privately, then be transferred into their care on the NHS might be another option to consider.


This is brilliant advise, thank you. I've come across Prof Davis and Dr Jenner, any other suggestions would be very welcome.

Fluppypuffy you've been so very helpful :)
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Re: Desperate prescription & diagnosis help needed

Postby Jeany » Sat Mar 01, 2014 4:48 pm

Write down exactly how bad things are and how desperately you need help NOW not in 5 months. Then hand it to your GP when you go. If you include what you want and how much you really need help it will mean you don;t feel under pressure when you are at the surgery and you will avoid getting confused.

Good luck x
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Re: Desperate prescription & diagnosis help needed

Postby denys » Sun Mar 02, 2014 12:30 am

Prof Davis of Guys died last year, so you may have to find out who his successor is. I would also council against the use of any illegal substances, as we have enough problems without adding to them
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