Starting to get scared

[Jacksono]

Hi everyone

I was diagnosed with fibromyalgia, arthritis, hypermobility and raynaulds in 2016. I'm taking zoomorph 10mg slow release twice a day and gabapentin 300mg 4 times a day for fibro. I also take vencalm XL as I am bi polar (diagnosed 1997).

Over the last 4 months I've had a noticeable decline. My pain and fatigue has become so bad, that I've not even been able to take my daughter to school several times a week in November and December. She is autistic and goes to a special school 20 minutes drive away. She refuses the school bus and I have no one who can take her or pick her up for me.

Over the last two months, I have had nasty stomach pain in my abdomen, around the area of my belly button, every time I eat, that lasts for a couple of hours. Just recently this also happens when I drink. With this I have constipation, which I've never had, even when I take tramadol or codiene. I've always been the opposite. I am going to the toilet daily, but it has become difficult and I don't get any feeling that lets me know I need to go. I also feel sick a lot of the time.

At the same time I have been suffering with terrible back pain. It's so bad that moving in bed wakes me up and I struggle to get in and out of bed, in and out of the car etc.

I sleep for roughly 5 hours during the day and sleep all night. Today I have just woke up after sleeping 2pm-7pm yesterday and going to bed at 11.30pm last night. (It is 12.36pm and I've been awake about half an hour). I'm struggling to move and could easily go back to sleep.

My memory has become shocking.

I'm extremely worried about what is happening to me. I just can't function. I've always been really good at pushing through and getting things done, but I physically can't anymore. My body just won't work.

I'm really worried and at 45 years old really scared about my future.

Any advice welcome. I need to get my daughter through her GCSEs. She is incredibly intelligent, but needs lots of help as she has Aspergers.

Thank you in advance ❤️

[Yassytina FMA UK Volunteer]

Hello, you have a lot going on and horrible you are struggling so badly ☹️, do you have any family too help at all ? You sound like you are getting sleep and resting proberly more than you would like at the moment, may I ask have you seen a doctor lately about your health ? Wondering if they can review any medication and a good check up , wondering if your body is going through a Fibro flare ?I would mention this Stomach pain as well xx

[Jacksono in reply to Yassytina]

Hi, thank you for replying. I have phoned to get an appointment, but my doctor still does phone at 8am for an on the day telephone appointment, and I haven't been able to get one when I call. I'm on hold for 40 minutes and they have all gone. So I gave up after a few attempts.

I've been looking at the research done on gabapentin and think I would like to be weaned off it. I asked my doctor about this 18 months ago, but he said it was the best medication for fibromyalgia and told me to take an extra dose each day. I feel like I need to be sat with a doctor to explain everything, rather than over the phone as it will take a while. But I don't think my doctor is seeing patients unless he has to.

I'm so fed up, I've taken to sleeping and crying over getting help. So I wrote the above message to try and get over the lull and do something about it.

Maybe I should change doctor?

[Yassytina FMA UK Volunteer in reply to Jacksono]

Yes maybe a different surgery, I have actually gone into reception and spoke too someone as this 8am business is not very fair sat in a queue (my surgery has also introduced an online system you can leave a message from 7am , ) that is helpful, I get it ,you need someone too listen too what you are saying, at one stage I saw my practioner nurse ,they can write up meds and I found it easier too get an appointment as well, I even got too see a different doctor after mine retired , he approach was too laid back in getting me the right help 🙁@thank god I got too see a doctor who diagnosed my fibro and very clued up about the condition (took awhile ) xx

[Tim61]

Hi Jacksono , sounds as though you need to get a Face to face appointment with your GP ASAP, they cannot refuse to see you face to face, and if you’re having problems take it up with your Surgeries practice manager. If your current Gp is unwilling to see you face to face, I would look at seeing a more Caring GP , in your practice. Good luck and Happy New Year. It sounds as though you’re very run down if you’re sleeping so much.-

[Jacksono]

Thank you both ❤️. Happy New Year to you 🎉.

The other doctor in the practice is worse, so I will change doctor asap and try and get sorted 🙂

[Hollygreen]

Dear Jacksono,I've just had a message from the Fibromyalgia UK site about tramadol.

I recommend you go to the doctor. That's what they're for, surely.

My doctors are brilliant. It's a local health centre in the NHS and I see whoever I can but they are very professional and they always help me. They've been my family all my life, really!

I would never self diagnose.

Your daughter will get loads of practical help from the school. Groups of people are to support each other. Otherwise, why do they bother to even have a specialist school?

If you become pleasantly requestful and actually ASK for help, people will help you.

[Jacksono in reply to Hollygreen]

Sorry, I haven't self diagnosed. Yes, my daughter gets help from the school but it's not as simple as that.

You are extremely lucky if you have a good GP surgery. It is not standard that GPs are clued up on fibromyalgia.

I ASK for help, but have very few people around me and my closest friends have lives and children of their own. My mother is 80 years old, so I don't ASK a lot from her.

[Binky68 in reply to Hollygreen]

what did they say about Tramadol ?

[marilynmcl]

never been on tramadol so no idea

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I'm 48. I have fibro, diabetes, under active thyroid, diabetic neuropathy, mild pcos and take tramadol because I cannot take anti inflammatory meds due to a stroke I had. The tablets make me very constipated and then there are days when I can't stop going to the loo! I am fatigued, sleep a lot, mobility not great from the stroke and struggle with day to day things such as showering/getting dressed/ walking etc. I experience sharp pain in my stomach, around my ribs and shoulder blade, nausea, headaches, back pain and much more. This can come on at any time but mainly after eating. I was passing blood too. After seeing a consultant and then having a CT colonoscopy they informed me that my insides looked fine apart from a non alcoholic fatty liver (I am overweight and diabetic but don't drink) but that they think I am suffering from IBS. I am now on medication for cramping/spasms. Was told to also improve my diet and diabetes control.

The tramadol is not helping because it makes me constantly constipated and dizzy and I only take 50mg a day. I am so reluctant to take it because of the way I feel when on it and not in a good way. It can wipe out a whole day for me. I also take nortryptaline on occasion. Have a look at the side effects for opiate medications as there are many. The zomporph may be the cause of the tummy issues. Fatty liver disease also causes a lot of the symptoms I am having especially pain in the stomach and back so I think my pain is from a combination of things. I'm no further forward with regards to pain relief but at least I know it's not colon cancer or something like that (my nan passed from colon cancer many years ago). Hope you get some answers and feel better soon.