living with a chronic condition (part 4)

kassandra

black_paw wrote: »

i don't have stings, but have lots like pins and needles ..numbness...and stab and twist knife feeling !

I get all of those and the stings, plus an electric shock type pain every now and then :rolleyes:

I'm actually glad it was brought up cos I just thought I was weird and it gives me the incentive to write them down for physio/rheumy/gp so they have a better picture. Like the other day when physio asked me if I get a lot of pain in my hands, I replied "no" only to realise today when my hands are hurting that they feel like that quite a lot! Why don't I remember these things? It's really annoying cos even I would think "well it can't affect her life that much if she can't remember all her symptoms"

Unity wrote: »

Welcome to the spinal injuries camp then I think there are a few of us with these. Mine happened when I was 17 which is erm :rolleyes: shall we say - quite a while ago now .

You might need to ask your GP to be referred to the pain clinic nurse - a good idea as they are often more informed than GPs about the treatments available for long term and chronic pain.

I can say with regard to Amitriptyline (not giving medical advice here - just stating what is a recognised side-effect on the information leaflet) if you have a sleep disorder - Ami can make it worse. I have nightmares and very vivid dreams within seconds of falling asleep and these were made far worse. However Nortriptyline, which is very similar is reportedly better in this regard - although it is more expensive and hence not widely publicised :whistle:. I even have a friend whose doc told her it would interact with her other medication, although the pain clinic nurse looked it up and told her this wasn't the case!

I think I have turned a corner :T at last - but still feel about as rough as when I had a reaction to cholera injections back in the '70's - not good _pale_, but if I can get through today without vomiting it will be an improvement.

Enjoy the sunshine :j

Hmmmm I think I'm going to ask to be referred to the pain clinic. It was mentioned to me but they didn't do anything about it :rolleyes:

I find dreams to be more vivid on Ami's but it doesn't bother me too much. Only when I have a particularly bad one and it depresses my mood for a good few days after.

Glad to hear you're on the mend. Try not to move too much, not that us lot can make sudden movements , but it will/should help with the vomitting *crosses fingers*

jazabelle wrote: »

Hello all, I am new here. Sorry for the very long first post, just wanted to tell you all about myself and where I am up to! I have had constant pain in my neck and back for seven years, but has spread into what I would describe as every muscle in my body now. Different joints flare up, particularly my wrists, I am constantly tired and have that huge list of symptoms that a lot of you will be familiar with!

Awhile ago I stumbled on the illness Fibromyalgia on the internet, and was thrilled as it fit pretty much every symptom I had. I wasn’t the only one! Not that I would wish this on anyone else, but nice to know you aren’t crazy or alone. A brought this diagnosis up to a number of GPs, who all agreed with it. One did the 18 point trigger test, and said it really does sound like you have it. As you know, you then have to see a Rheumatologist to get it officially diagnosed.
I saw a doctor at the pain clinic two weeks ago, who was awful.

He told me the pain was probably all in my head, that there was nothing physically wrong with me, and acted like I was invisible (he directed everything at my mum). He did refer me for an MRI to “prove there is nothing wrong with me” and to a Psychiatrist. Nice. There is nothing wrong with seeing one, I just don’t think talking will cure me.

I then saw a Rheumatologist last week and he said he didn’t think it was Fibro. He didn’t ask my symptoms, didn’t ask what tests I had in the past (e.g. all the blood tests you have to rule out other stuff) and certainly didn’t do the 18 point trigger test. He did diagnose me with Hypermobility Syndrome, however. I had heard of it, but didn’t know much about it. I went home and researched. When I read about Fibro, from the basics to the in-depth books, it was like a connection, reading about my life. Hardly anything about HMS fits me. I have pain, yes, but I’m not double-jointed, never dislocated anything, not injured frequently in the way that’s described. So I’m sceptical. He did say I had it in my knees and fingers, and while my fingers appear normal, I can bring my foot up to my face with ease. Whether that is HMS, I don’t know. It seems more like a flexible hip to me!

Yesterday I was turned down for DLA at the tribunal, which I detailed in another post. So at the moment I’m feeling let down and not sure what to do! I’m not sure I believe in my diagnosis, and can’t understand why he doesn’t think it’s Fibro. He gave me no reasons for this.

I have no pain relief at the moment, and neither the Pain Clinic or the Rheumatologist discussed medications with me. My GP said they can’t put me on anything higher than what I’m on – so I’m a bit stuck!

Off now for Deep Tissue Massage, and then to the Physio.

Hmmmm me thinks you needs to find yersen another rheumy! I'm not sure (although I am sure someone on here will know) but there is that thing the nhs or pct's are doing now where you can choose where you go. As I say I'm not sure with what it relates to as I've only glimpsed at posters but it's worth finding out and then making some calls to rheumie's to find out what their speciality is or what their take is on Fibro.

Hypermobility is weird, I only got diagnosed with it about a month ago. I always thought I had freaky hands and wondered why I couldn't stand up and bend over to touch my toes yet I could kick myself in the face :rotfl::rotfl:

Hi by the way :hello: Where are my manners :rolleyes:

black_paw

Hypermobility sorry never heard of that .what is it please ? i can imagine people running every where double quick time !!

kassandra

black_paw wrote: »

Hypermobility sorry never heard of that .what is it please ? i can imagine people running every where double quick time !!

:rotfl:I know what you mean :rotfl:

I would have thought that was the last thing I could be called!!

It's where your joints move too far either way. In most people their joints have a limited flexibility whereas in hypermobility the joints move to the extreme causing pain. Rheumy asked me if I was good at gymnastics when I was younger and I replied with surprise "Yeah! How do you know!!!", she just looked at me for what seemed like ages until I twigged and felt really embarrassed :rotfl:

jazabelle

Thanks everyone! Will come back and answer properly, but got to rush out now.

He is the third Rheumatologist I've seen. He didn't say he didn't believe in Fibro, but the guy at the pain clinic did. He was like oh, I don't believe that exists at all. I replied, "Oh, you're one of those, are you?" Ugh - why do we have to fight to have competent doctors!!

Black paw - hypermobility sadly doesn't make anything quick! It means your joints can do a bit more than they are supposed to, which then puts a lot of additional stress on them. A common sign is being double jointed.

bigzippy

pipkin71 wrote: »

I've been taking the gabapentin for a while now, and have to say it has really helped the nerve pain. Before I started taking it, I honestly felt like chopping off my foot to get some relief from the pain.

I'm also taking the tramadol - slow release though, and it all helps

I know that feeling - I would happily pull of my fingernails to get at the nerve endings underneath some days...:cool:

kassandra wrote: »

I get all of those and the stings, plus an electric shock type pain every now and then :rolleyes:

Yep, I hate that one. The favourite(!) place at the mo is going through my left neck gland. It's effing painful!! and uncomfortable too. Horrid. (And noone best say it's my own fault for over doing it!!)

kassandra wrote:

I'm actually glad it was brought up cos I just thought I was weird and it gives me the incentive to write them down for physio/rheumy/gp so they have a better picture. Like the other day when physio asked me if I get a lot of pain in my hands, I replied "no" only to realise today when my hands are hurting that they feel like that quite a lot! Why don't I remember these things? It's really annoying cos even I would think "well it can't affect her life that much if she can't remember all her symptoms"

Agreed. It's so irritating. I hate that thing where you wait months to see a consultant, then finally get to your appointment and you forget all the things you were gonna ask until you're halfway home! Or you realise that you answered them wrong (like above) and that that might sway their opinion and therefore have an affect on the tests/diagnosis/support/benefits/help you get!:rolleyes:

So much to do....so little [STRIKE]time [/STRIKE]energy...:rolleyes:

LameWolf

Careful_with_that_Axe wrote: »

lw Sorry to hear you're having a bad day. What can we do to help you?

kassandra wrote: »

LW, aaaaaww sorry you're feeling like this. PM me if you want to rant/get something off your chest xxxx

raeh wrote: »

LW hugs to you as you havent been back in, I hope you are ok x

Thanks guys. I don't have the energy to type it all out, but if you look at Post # 451 on the "Black Dog of Depression" thread, I said it all there. Plus of course the kerfuffle over what's on-or off-topic here, which has made me very wary of posting again. Didn't get online at all yesterday; hid in the bedroom and let Mr LW deal with the workmen (there were 2 of them in the end) and of course then it was hossy time. Nightmare, that was, too. Still trying to play catch-up with jobs that should've been done yesterday - not easy when you're shaking like a leaf. Sorry, this is turning into a whine; will shut up now.

Paparika

Numbness in my fingers/hand, yes the nuro consultant is aware of it, carpel tunnel has been ruled out i think.

i was asked by the rheumatoid doc about gymnastics as a child too.
I do remember i had a habit of a child to sit on my legs kneeling down, then let me legs move outwards.. does that make sense, my family thought i was weird, but i found it comfortable.

But i do have a naughty habit that i just can't get out of, and only do it at home or at OH house, if sat at the pc, i sit crossed legged, i find it comfortable, for a little while whilst my back is screaming at me, but i've sat like that for years and doing it right now.

pipkin71

Hi jazabelle. Do consider asking for another opinion. It must be difficult for you right now, not having a diagnosis, and even though it's not something you would wish, I know the diagnosis part does give some relief, even if it isn't so great.

We had a mini drama today.

I must have stubbed my toe, but didn't feel it as the toe's numb, and bled out onto the carpet :eek: I didn't know until DD saw it, but thankfully wasn't so bad, and did stop after a bit of pressure. That will teach me to go barefoot in the house :rolleyes:

Paparika

oh dear pipkin what are you like.

ouchie tho i suppose it is a good think you can't feel it :rolleyes:

pipkin71

Paparika wrote: »

oh dear pipkin what are you like.

ouchie tho i suppose it is a good think you can't feel it :rolleyes:

That's what I was thinking :rotfl:

I bet it would have hurt as I've taken some of the nail off