Fibromyalgia Action UK

Fibromyalgia but with out the extreme sensitivity

Joined up to this forum due to restless legs syndrome. But looking at all the things going wrong with my body lately I would think that I've got Fibromyalgia. I've had an neck/ headache for longer than I can remember and Irritable bowel syndrome is killing my sleep more than the RLS. But I put it down to the really bad myoclonic jerks inflicting real injury as I'm not just flying my legs about, been giving my head a good shaking too. I've also get a lot of pins and needles in my arms and hands that I put down to the jerks.

The jerking happens day and night every time I try to really relax. It's like I'm allergic to relaxation, you should see me when I try to meditate, I look like a madman. I can only do walking mindfulness meditation and that can bring peace but cant make up for sleep loss like proper meditation.

Got the extreme tiredness down to a tee also plus I never have any sleep quality at all. I always feel like I'm coming down with something so flu-like illness really says how I feeling most days. I also have strong markers for ADHD (only had the one apportionment for this) but that could be the fibro-fog. I have to go over every thing I write again and again and some times it makes no sense and is really frustrating. I've been working on this post as of this line for about 30mins.

Depression and anxiety is quite bad. My self worth is well messed up. Been getting a lot of blackouts or close as you can get with out passing out. It's bad enough tho that I tend to not know where i am and who is about for several seconds after. Had the odd time when my body seems to be trying to pump the blood to my head when it happens. Hard for me to explain that one but it's different to the jerking it really seems like the body is pumping the blood.

Now to my question lol well kind of ;)

I think my response to pain is within normal range other than stubbing ones toes dose seems to go on more than it should but ant that normal? I thought it was till I read the symptoms now I cant tell.

So can I have Fibromyalgia and not have the extreme sensitivity to pain?

It seems a better fit than just RLS. The brain/movement specialist I'm seeing has stopped my GP from testing any more of the medications the neurological/RLS specialist has gave him. I have been quite angry about this and thought the brain guy is just wasting NHS money by doing more testing but I can see now there might be more to me than RLS.

Been so long as the original neurological/RLS person I started with quit her job without any notice. So I'm at braking point now for sure as I thought it was good as the new one gave a big list of drugs to test unlike the first one did. Had a brain scan that was all clear but been several months and still not even received an appointment for the brain guy.

Anyway I think that should do for now. I've impressed my self to get this much out in one sitting. It really has taken me a long time and I hope it is readable :)

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Quick reply - been off the site for a while now. From my experience fibro can present a very different range of symptoms in different people. I don't have hyper sensitivity to pain either, nor do I have RLS or IBS - both common in fibro sufferers. But I do have rheumatoid arthritis and widespread tendinitis. It doesn't feel as if there is much to be done to help with fibro - alleviating symptoms to some extent seems possible, otherwise just focusing on any problems that can be fixed.

Thanks for telling your story and good luck.

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My joints are not the best considering my age of 33 so arthritis could be on the cards too or some thing similar. My left knee seems to get away from me more than I would like if standing about. Been getting some odd stiffness in the joints of my hands too but that could be a lot of things considering my family.

My mum had Carpal Tunnel that could also cover my stiffness and the pins and needles. On the other side of things my Nan had lupus that came with a range of other stuff but I've never had a butterfly face or hives so I'm good there I hope. Think testing for lupus is a lot easier now so I guess I could still find out. I know back before my Nan got diagnosed they treated her like she was an alcoholic.

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Hi There! I'm so sorry you are having such a hard time and I do hope that you don't live alone and have family with you. especially if you are prone to blackouts.

You could have fibromyalgia also? I get the restless legs and the same feeling down my arms regularly ,and not sleeping is another fibro symptom plus chronic pain and the flare-ups which are hard to cope with.

You will get lots of information on this site about fibro and it is something you should maybe discuss with your Dr's. Fibro can cause all sorts of things and I believe depression/anxiety is another symptom some fibro sufferers can have. A fibro member posted not so long ago that she wore flight socks in bed every night and this had put an end to her RLS. I tried this but it didn't help me though if I remember correctly I think she used ones that came up over the knees where as mine didn't.

I hope you get some answers to what is going on with you, take care x

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I never managed to get out of my Mums house so I'm not on my own often. I tend to feel them coming so yet to hit the floor with them. So I'm reasonable safe on when on my own. But thanks for your concern, it is appreciated.

Will have to look into the socks. Can also try Electrical Muscle Stimulation(EMS) to improve circulation, that is what the socks do if I'm not mistaken.

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Glad you have your Mum at home. Im not sure what the flight socks actually do, as I said they didnt help me but must see if can buy over the knee ones if such a thing exists. The only thing that takes my restless legs away though keeps me off my sleep is Tramadol. I hope you feel a bit better Go Bless x

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Hi, so many symptoms overlap that a diagnosis of fibromyalgia is reached when nothing else tests positive. The symptoms, and their severity, vary from one person to another. I get extreme fatigue, awful headaches and neck pain but the other random pains I get in my limbs are bearable and don't really affect my life much.

Have you seen any of your blood test results? It is worth checking that you don't have any low levels. Drs will often say you're within range when they can be at the bottom of the range and affecting your well being. I treated myself for B12 deficiency ( I was low, but just within the range) and my pins and needles, tinnitus and hand tremor disappeared. It's worth getting a copy of any test results and looking over them.

For restless leg I found magnesium helped. Either massaging magnesium oil into my feet or taking a supplement at night.

I've found with fibro ( I got a diagnosis from a Rheumstologist in May after blood tests, respiratory tests, chest X-ray, scan and ECG revealed nothing abnormal) it's a case of treating the symptoms. They're so varied that I don't expect to find one thing that will treat all. I recently stopped taking turmeric and black pepper and after a week began to feel stiffer in my limbs, definitely can't move as well, so I'm waiting for a new supply to arrive.

I don't take any prescription meds as I always get full blown side effects so don't want to risk it ( and my GP is totally useless anyway) I've found soluble paracetamol helps with pain, but regular paracetamol does nothing. Cocodamol when I'm in severe pain. I use Perskindol gel on my neck and Salonpas patches when I'm desperate.

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I'm do wonder about my bloodtests. The first lot over a year ago did have some borderline results but I cant remember what. This time round they was ok tho. But I will ask about them from the specialist. I know the brain guy said he would be getting bloods done so maybe he will see something my GP doesn't.

Going to have a look into magnesium oil as I have never tried it. Tried taking pills but I guess it might not be making it down to my legs. Never realised all the benefits of Black Pepper I'm guessing just cracking some on my food is not enough? :) I'll skip on the ginger(turmeric) tho as that dons't agree with me what so ever.

I found one drug that seems to help a lot but got less than a strip of them I pinched of my sister, brand name neurontin drug name Gabapentin 300mg. I don't even remember waking up at all last night.

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