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The UKFibromyalgia Forums • View topic - Hello, New Here



Hello, New Here

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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Hello, New Here

Postby CarrieH » Thu Feb 07, 2013 8:22 am

Hello, I'm new to the forums, so here's a quick intro. About 10 to 11 years ago I had a terrible time, permanently exhausted, kept collapsing at work every day and although I've never been heavy, my weight plummeted to just less than 5 1/2 stone whilst this was going on. It seemed I had all the symptoms of CFS and all my friends thought the same. Blood tests came back as normal, so asked the doctor about CFS. At that point he told me I needed psychological counselling because I was believing in a media created illness which did not exist and that he was putting it in my notes that I was imagining myself to have a non-existant condition which had been created by the media and was not a known medical condition. Refused to go for the counselling and after about 18 months things settled down and I put weight back on.

Got on with life after that until January last year when I started with shoulder pain. I have scoliosis and every couple of years this does cause my shoulder to flare up and a trip to the Chiropractor puts it right. This time the Chiropractor didn't put it right. I will say that my dad has mixed dementia and it was in January that he was sectioned and remained under section until May when he went into an EMI nursing home. My parents live 290 miles away, so I was making continual trips to sort out things for them. Driving that distance was agony for my shoulder.

By April the pain in my shoulder was meaning I was only getting 1 to 2 hours sleep a night and could barely lift my arm so my doctor referred me to Physio. First physio session left me in agony and second session he admitted he'd obviously vastly overdone things. At that point my shoulder and lower back became sensitive to the merest touch, even just clothing could be painful. The physio had my fiance doing trigger point massage which my fiance hated as it left me in agony. Physio also did acupuncture, which did help a bit.

By late June the Physio decided to get another Physio involved and to look at my lower back where I have the Scoliosis. This was the time when the problems started spreading to my hips and my movement was very limited. July came and Physios said I needed to go back to the doctors as they couldn't do anything whilst my pain was so variable, they also said they'd write to the doctors suggesting a referral to the Chronic Pain Clinic.

Back to the Doctor who prescribed Amytripilene which had me so I didn't know what I was doing, had no recollection of conversations with people, journeys made etc. Didn't stay on the Amytripilene. Lots of blood tests and x-rays. By October the doctor had me fill in a pain questionnaire so she could do a referral to the Pain Clinic. I've got my first appointment at the weekend.

In November I saw another of the practice GPs and she was the one who said that I appear to have Fibromyalgia (she said GPs don't make a firm diagnosis, I have to wait for the Pain Clinic for that). She did say that because my limited movement meant she couldn't do a proper examination she was signing me off on the sick for a month and prescribed Gabapentin, but I couldn't swallow the large capsules. Prior to that my shoulder and hips had been increasingly reactive to the cold and that problem was spreading over my whole body. The cold problem alleviated whilst I was off sick, but I find I'm in a vicious circle. If I get cold I go exhausted (it's so quick it's like someone flicks a switch off). Also, if I go exhausted, I go cold. If I get cold it takes 3 to 4 days for the pain and exhaustion to subside. It's the cycle of cold and exhaustion that I'm finding hardest to deal with, especially with so many unheated areas at work.

Used to be very active walking miles and miles with our dogs, but now my fiance often has to drop me right outside work. My hips are terrible and any stairs cause intense pain.

Part of me is dreading my Pain Clinic appt because it'll last 1 hour 20 minutes and I have to see two doctors and a physio, but the other half of me is just hoping it'll bring some help.
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Re: Hello, New Here

Postby shazq » Thu Feb 07, 2013 6:23 pm

:welcome: to the forum Carrie :wave:

Hopefully the pain clinic will give you some answers and the right meds to get you pain under control.

Once you have your pain to the level you are able to cope with you will feel better, it can take a time to find the right meds that suit you and most of us have to take a combo of meds so dont be surprised if you need more than one type of med.

:goodluck1: at the pain clinic. :hugs:
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Re: Hello, New Here

Postby CarrieH » Thu Feb 07, 2013 6:30 pm

I've actually already been told by my GP that if I'm unable to find a way to swallow the Gabapentin capsules then there's no other medication option available to me as any others are too expensive.
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Re: Hello, New Here

Postby shazq » Thu Feb 07, 2013 6:33 pm

:shock: have you tried cutting them in half? or if they contain powder sprinkle it on some bread and eat it?
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Re: Hello, New Here

Postby CarrieH » Thu Feb 07, 2013 7:35 pm

Checked with Pharmacist and doctor, they're not suitable for breaking open in powdered version, would cause throat and stomach damage. Tablet version would have to be cut into 8 pieces to get the dose the dr wanted to start me on, so not an option. Liquid version of gabapentin costs £200 per week. Was told no other different types of medication available.
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Re: Hello, New Here

Postby FluppyPuffy » Thu Feb 07, 2013 7:47 pm

:welcome: to the forum CarrieH :wave: :wave:

Sorry to hear what you've been going thru in trying to get some answers as to the cause of your problems :-? :-? :-? There are other medication options available, this linky explains about the types of meds that can be used in management of FM http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx Maybe a look at it and a chat with your GP about them might get you a bit further forward. If your own GP seems somewhat closed to the idea of other meds then try seeing a different one at your surgery and see what they can suggest.

The thought of a long appt anywhere can be :yikes: :yikes: :yikes: :yikes: Hopefully tho, after assessing you they may be able to come up with some suggestions for things that might help you :fingerscrossed: :fingerscrossed: :fingerscrossed:


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Re: Hello, New Here

Postby shazq » Thu Feb 07, 2013 7:51 pm

Hi
Pregablin in similar to Gaba`s when someone cant cope with the side affects then the other is given but not sure if they are the same size tablet?

Here is a list of some common meds used to treat fibro, try asking your gp if they would consider giving you one of them to try?

http://www.nhs.uk/Conditions/Fibromyalg ... tment.aspx
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Re: Hello, New Here

Postby fatanne1 » Thu Feb 07, 2013 8:52 pm

welcome carrie :-D
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