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Fibromyalgia sufferers, I need advice please!

(32 Posts)
JamaicanMeCrazy Sat 08-Nov-14 09:19:30

I have suffered with fibro for 8 years now, diagnosed a year ago.

I currently take gabapentin, tramadol, naproxen, ranitidine and paracetamol plus otc meds for ibs type symptoms and prn medication for my allergies and regular steroid injections.

I get some quite severe myoclonic jerks, and as I am already in a lot of pain, these make it all worse and leave me in even more pain.

I want to get help for this, but my doctors seem to dismiss it hmm

I have other issues alongside the fibro- trochanteric bursitis and Cervical Spondylotic Myelopathy and I walk with a stick and use a wheelchair when needed (a lot more often these days hmm)

My question is what medication(s) are you on, how has it helped you and are there particular specialists (I don't mean the specific doctors, but the department they work in iyswim) that have been useful to you and how have they helped?

I'm especially interested if anyone else gets myoclonic jerks and if you have had any treatment for them and how that has helped (or not, as the case may be)

Thankyou thanks

JamaicanMeCrazy Sat 08-Nov-14 10:30:48

Anyone?! sad

Daisycat22 Sat 08-Nov-14 15:25:02

Hi JamaicanMeCrazy

I have Fibromyalgia (was diagnosed about 18 months ago). The Rheumatologist prescribed Amitriptiline, Gebapeptin and referred me to a pain management programme.

I have a fear of being sick so taking any of those meds was out of the question for me (worried about side effects) and the pain management programme was a waste of time.

I have recently managed to start Citalopram (10mg) which my GP said will help with the pain but it hasn't yet.

Sorry I can't be of any help really.

QueenandKingMum Sat 08-Nov-14 15:29:34

I was diagnosed 3 years ago and I only take tramadol 100mg 3x per day and 100 slow release overnight and 25 mg amitrypaline. I tried both Gabapentin and pregabalin but it used to make me jerk uncontrollably and confused and dizzy. My pain is barely in control, it's something I'm forced to live with. I'm in agony and exhausted, it's a cruel condition

JamaicanMeCrazy Sat 08-Nov-14 16:05:42

Sadly the jerks for me are not related to medication and really I need some meds to control them sad

Thankyou for replying. smile

I am allergic to amitryptaline so that's a no go, I'm sick of this too, I'm on all these meds and they barely touch the pain, and with 2 other painful conditions I'm a mess. I'm only 25 sad and I have 3 kids. it's so frustrating I hate what it does to me. I would love to get a motorised chair as I can't self propel the one I use now and need dh to push me around and it's neither practical nor useful to me. Social services are helping to get adaptions to my house sorted so I can remain here as there are no houses available for my family that are single level and I have to get dh to help me up the stairs as the toilet is up there and out downstairs loo is broken. Life is really bloody hard at the moment.

Do you get any benefits for your fibro? thanks

toffeelolly Sat 08-Nov-14 18:55:05

Doctor thinks I have this condition also. All bloods came back clear being having pain throughout my body for past year. Now have to wait to see a consultant. What way do they test you for it? Does anyone suffer also with tinkling and pain and needles on hands and feet? Some days my pain is bad then other days feel abit better. Had never heard of this condition before my doctor mentioned it.

JamaicanMeCrazy Sat 08-Nov-14 19:48:07

information on fibromyalgia for you toffylolly thanks

Daisycat22 Sat 08-Nov-14 21:57:47

JamaicanMeCrazy . . . It is an extremely frustrating condition. I am going through a major flare up of pain and fatigue at the moment and I'm really struggling to work at the moment.
Can social services help you get a motorised chair or do you have to buy it yourself?

I have applied for PIP and I have a home assessment in 2 weeks. Do you get this benefit?

toffeelolly . . . Will you be seeing a Rheumatologist?.....That's who I was referred to. She did lots of blood tests, x-rays and scans and tested for the tender points on my body then gave me the official diagnoses.

toffeelolly Sat 08-Nov-14 22:20:15

Not sure yet who I will be seeing as have to go back to doctor on Wed to get my blood results ( had them done 6 months ago but he wanted to repeat them before he referres me. It just gets me so down at times and get so tired.

JamaicanMeCrazy Sat 08-Nov-14 23:07:56

Yes I get PIP at standard rate for both care and mobility, but that's the result of my assessment at the start of the year when I wasn't as bad as I am now. I think at the moment I would probably be assessed as enhanced rate for both as I can barely move and need help with most personal care and other stuff like cooking. sad

I don't know if I can get a motorised chair, I can't pay for one myself though, dh is my carer and doesn't work and I am on a low income already and will be leaving my job as I cannot physically do it anymore, so will be soon be relying completely on benefits.

It is a sucky illness to have, and along with the other conditions I have I am a bit broken most of the time! I feel for anyone who has to go through this, I wouldn't wish it on my worst enemy thanks

toffeelolly Sun 09-Nov-14 11:41:51

What is really worrying me till I get it confirmed that these symptoms are similar to ms. Really do not know how long it will take to see a consultant at the hospital.

QueenandKingMum Sun 09-Nov-14 12:34:20

What is PIP? I have fairly good mobility for which I am very grateful but as a childminder I have to limit my charges as I need a lot of rest. Any income support would be amazing

QueenandKingMum Sun 09-Nov-14 12:36:00

Jamaican can your DH get carers allowance? Id really look at assessing your needs for a hoist motorised chair and a carers allowance. Thinking of you, it's awful

JamaicanMeCrazy Sun 09-Nov-14 13:07:34

Yes he is applying for carers allowance.

PIP replaced dla for adults, you can get it if you have significant care/mobility needs that affect your day to day life. They can be quite strict at assessments, I was lucky they let me have mine at home rather than have to go somewhere for it. You can get it whether or not you have a diagnosis

info on pip here

QueenandKingMum Sun 09-Nov-14 13:17:50

Is it worth doing? Part of me feels like I don't want to have to justify it, however spending most of this weekend on the couch or in bed sleeping, I know I haves problem. Looking at those factors, I can do all of them, part from clean and tidy the house, upstairs is a bomb site I can only manage the basics.. I don't know what to do..

Back to you though, can you get to see the rhumy again and see what they can do? I was starting a physical therapy regime as hyper mobile as well but can't make it.

Loveisashadow Sun 09-Nov-14 19:59:42

I was about to post on this forum for exactly the same condition. I am 27. I've had major depressive disorder and psychosis in the past 6 months, plus two beravements (one dd's Dad, my ex). Started out with pains in January- everyone thinking/ saying somatic. Now my psych thinks I should have a blood test to rule out fibro because of the pain and fatigue. I get tinglining as well, as mentioned above, night sweats, pain in almost every part of my body (really bad in upper legs), fatigue, IBS, migranes....I'm on 60mg of Duolextine, which has taken the edge off the pain. I'm on quietipene to help with anxiety, too. Pnr. I'm going to the GP tommorow about it all. I don't want to hijack the thread- but can anyone help me with what to expect. I'm really mobile, but considering getting a stick as I find walking painful. I'm a single mum as well.

NoMarymary Sun 09-Nov-14 22:08:18

My dd is 5 and has cerebral palsy and suffers with myoclonic jerks. The doctors have mostly ruled out epilepsy as it occurs when she is half in and out of sleep. Basically there isn't a cure although chloral hydrate (a sedative) stops them in their tracks. But it's a real sedative so not practical to take often. MJ are worsened by tiredness and fatigue, but I guess you've worked that out. A weighted blanket helps damp them down.

She is having Bowen therapy and the therapist said she had fibromyalgia and was almost wheelchair bound and went to a homeopathist had treatment, altered her whole lifestyle and diet and had Bowen therapy and she is cured.

JamaicanMeCrazy Mon 10-Nov-14 01:17:57

Loveisashadow there is no blood test for fibromyalgia, the blood tests they do rule out all other conditions that present in the same way, like ms, thyroid conditions etc. They don't know the cause of fibro really so there is no definitive test for it, basically if they can rule out every other illness/disease then they can diagnose it. That's why it can take years of tests and pushing the HCPs to get a diagnosis. There is the pressure point test but that isn't foolproof since those points could be painful in other conditions so they won't diagnose based on that alone. Good luck, I truly hope you do not have fibromyalgia and get better soon. I wouldn't wish this on anyone thanks thanks

JamaicanMeCrazy Mon 10-Nov-14 01:23:13

NoMarymary the jerks I get happen throughout the day, though they are worse at night or when I am sedentary- sitting/lying down. But I can't count the number of times I've spilt my coffee everywhere or accidentally thrown something or hit/kicked someone. There is such a thing as myoclonic epilepsy, and I'm going to talk to my doc about this as it is probably the worst symptom at the moment since it aggravates the other 2 worst symptoms- the pain and the exhaustion (I get kept awake by them every night sad)

JamaicanMeCrazy Mon 10-Nov-14 01:32:40

Queen if you don't apply, you'll never know. And when you fill out the forms it's best to think of how you manage on your very worst day as that gives them a picture of what care you can need and how mobile you are.

The assessment is fairly simple, the assessor will go over your medical issues with you and ask if there have been any changes etc. Then they will do a few simple tests with you eg gripping their finger/pushing against their hand with yours to ascertain if you have any weakness that prevents you from doing some tasks, making you walk a certain distance or bend over/squat (if you can). The whole thing in my case lasted about half an hour and the assessor was lovely (though I have heard horror stories about some of them!)

If you have any care/mobility needs at all then you should apply. And that includes being to tired to make food/do housework, forgetting to feed yourself (I know I'm guilty of that!) or even difficulties with dealing with paperwork ie needing someone to read stuff to you as you are too tired/muddled. There are loads of things that are relevant to the PIP assessment smile

Ask me anything you want about it, I'll try to answer thanks

Loveisashadow Mon 10-Nov-14 13:50:28

Jamician I went to the GP today, explained what was going on. They have booked me in for a test on Thursday (bloods). He says that my inflamatory markers will be a good indication of whether I have it or not (a C something test)? And white blood cells, too, though that's to rule out infections.

Has anyone else experienced this? I'm in constant pain every day- nothing seems to help, though the level of pain fluctuates sometimes for weeks at a time. I also have night sweats, IBS and migranes. All of this started in the past 9/10 months. The tops of my legs are the worst- the muscles I use most ache constantly and I will get sudden pain even when I am just walking to/from school with DD. The pain makes me cry sometimes and even dd kissing me hurts.

I am worried that my blood test will be OK and I will have to keep living like this because they can't figure out what's wrong.

Matildathecat Mon 10-Nov-14 14:12:14

OP, firstly I don't have fibro but do have chronic pain. Hope that's ok to post. I have had treatment with the Hospital for Integrated Medicine in London ( formerly the Royal Homeopathic Hospital). They have clinics for fibro there. I had, through the Pain service, a Lidocaine infusion. It didn't help me but apparently was very effective for fibro and these patients came back several times a year for this treatment.

Also you can ask for a reassessment of needs for PIP if your condition has changed. If you qualify for Higher rate mobility then you can apply for Motorbility and choose either a car or scooter. It's a great scheme.

Good luck and I do hope you find a treatment that helps. Oh, I'm sure you haver done all this but have your B12 levels been checked?

JamaicanMeCrazy Mon 10-Nov-14 14:53:41

Like I said, there is no blood test that shows you have fibro. My guess is you're talking about a complete blood count? Any bloods taken will be used to test for other conditions. Unless you're not uk and we're missing something?

I have been to the pain clinic here (which is run about 30 miles away, I don't drive and neither does dh, so this takes hours to get to) but they were of very little help.

JamaicanMeCrazy Mon 10-Nov-14 14:55:25

Oh and yes, I've had my vit levels checked and take supplements for the ones I have deficiencies in smile

Loveisashadow Mon 10-Nov-14 16:31:37

I'm the UK Jamician. After googling (based on what my Docs said), it looks like they are using the fm/a test they use in the States over here. My GP said that the test will show raised inflammatoy markers (c something?), but they are doing it as part of full blood tests and counts. I know nothing about this condition at all- apart from what I'm experiencing,what they have suggested and what they are doing next. Absolutely nothing at all, all that I know is I'm in pain and I don't know what it is.

30 miles! Do you get any help with the transport? That must be exhausting.

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