living with a chronic condition (part 4)

bigzippy

pipkin71 wrote: »

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:

Have you ever had Raynauld's mentioned to you?

Careful_with_that_Axe

raeh, lw I'm sorry to hear you are both having flare ups. May they be gone quick smart. I suspect I'm heading that way too, I just have to hold out until next week - after THE WEDDING OF THE CENTURY

Pipkin That sounds nasty - hope you manage to get it clean and stop the bleeding.

jazabel You have had a rotten run of bad luck. You must have been particularfly evil in a previous life
May things change for the better for you soon.

bz You really need to keep on top of the countdown (although being ill :rolleyes: it may slip your mnd).

Blackpaw You do make me laugh! Dead ducks and now lots of people sprinting round with their feet on their heads

I have awarded myself the afternoon off despite the mess - I tried doing some gardening, but after about 40 mins I was fit for nothing and everything hurt. Now sitting on sofa with a cup of tea and some Dunkers.

pipkin71

bigzippy wrote: »

Have you ever had Raynauld's mentioned to you?

I haven't, bigzippy.

The numbness has always been put down to the nerve damage I suffered when I had the car accident.

jazabelle

raeh wrote: »

how many times has it been said im depressed and that causes pains ... err nope im in pain constantly and that makes you pretty bloody depressed!]

Thank you! Yeah, who the hell wouldn’t be depressed when in constant pain? Everyone is grumpy when they have a headache or something, how would they feel if it then didn’t go? It seems a shame people have to go through so many healthcare specialists until they get one that takes you seriously.

Unity wrote: »

Welcome Jazabelle,

Crumbs you are going through it at present. Unfortunately there are some rheumatologists who don't believe in fibro and it sounds as if you may have met one. It is exceptionally galling to be met with this attitude since the World Health Organisation recognises the syndrome and presumably they base their decision on in-depth research by many informed specialists! It is difficult to know how the rheumatologist could rule out fibro without doing the 18 point test

Yeah, it’s such a shame. At least he didn’t come out and say unlike the guy at the pain clinic. It’s so disheartening. We just want to be treated, not to educate them!

Unity wrote: »

Nevertheless, you can ask for a second opinion and I am sure someone on here will remember the name of the Professor who is an authority on fibro. It might help to look through the earlier incarnations of this thread fibromyalgia parts 1 through 3. In the mean time, ring up today for another set of DLA forms and get the help of a welfare worker or CAB to fill them in. You need to know how to answer the questions in the way the DWP want them answered.

He is the third Rheumatologist I’ve seen, although the first since I’ve believed it to be Fibro. The first one told me I would grow out of it (I was 15 at the time. I haven’t). The second said it wasn’t Arthritis. Great, but what is it then?! I’ve been waiting since April to see this one. I don’t know that there are any others left to see!

Thanks, I will do.

Unity wrote: »

HMS doesn't rule out fibro in fact it is yet another problem with some similarities. I'm double jointed in my hands and despite my spinal injury I can still touch my face with my foot, so I put it down to my hips as well.

Don't give up, you are among friends.

Yeah, I could accept HMS that has led to Fibro. I visit Fibro boards on another site, and loads have both, so I can’t see why he thought it had to be one or the other. Thank you! I think some support is what I need right now

Paparika wrote: »

blimey jazz, your not having a good time at the moment.

keep pestering your gp to see a rheumatoid arthritis consultant, ignore the comments from the pain clinic (my turn next month - god help them if they give me that attitude)

It does feel like everything is a battle at the moment!

Before I went I thought that as well, about if he said Fibro doesn’t exist, or if he treated me badly. Sadly, I dissolved into tears and said nothing in return. Bloody useless! I hope to god you get someone better that knows their !!!! from their elbow!

Paparika wrote: »

I've been poorly for years, without knowing what was wrong, false diagnosis etc, it is such a slow process. But, don't stress about it, it won't do you any good,

that deep muscle therapy sounds so nice...

keep strong, and we are all here..

I’m really sorry to hear that. It’s hard not to stress sometimes!

Actually, deep muscle therapy, or any massage at all, is usually akin to torture! It’s agonising, and not nice at all. But if done right can give a bit of relief afterwards!

kassandra wrote: »

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

Yeah, except I’ve been discharged from Rheumatology at the moment, so guess it’s back to the waiting lists!

See I can’t do any of the normal Hypermobility stuff! So not sure I really do have it.

pipkin71 wrote: »

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.

Yeah, a diagnosis would be wonderful. They both said they didn’t want to put a label on it. I wanted to say shut up, I want a label!

bigzippy

Careful_with_that_Axe wrote: »

...I suspect I'm heading that way too, I just have to hold out until next week - after THE WEDDING OF THE CENTURY

Too right!:p

Cwta wrote:

bz You really need to keep on top of the countdown (although being ill :rolleyes: it may slip your mnd).

:shhh:

jazabelle

I just got back from the physio, who seemed to not know what to do with me when the pain is all over. He referred me to Hydrotherapy (which he told me he had done three weeks ago - so lied!), gave me some stretches then pretty much discharged me!

I am so annoyed. Physio was the treatment the Rheumatologist told me to do, and he has discharged me on my second visits without doing anything! On the first visit he just ran through my mobility etc, and today he poked me to see where I said ow!

At this point I am sick to death of getting the run around from everyone. I just want someone to take charge of my care and give me a break. I think I'm going to write a letter of complaint to the hospital about the terrible treatment I have been getting. I think I am going to request copies of my medical record letter from my doctor surgery, so I have the names and dates of doctors I have seen. Does anyone know how I go about formally requesting these, and if I would have to pay? I just phoned the doctors surgery, and she said the manager is on holiday and I would have to speak to her. When I wanted some stuff printed off from my GP at uni, they just printed it all off with no hassle at all. I do have the right to that info, don't I?

Careful_with_that_Axe

Have been a bit quiet as am tuckered out and feeling a little overwhelmed with life at the moment. Got into a bit of a tizz last night, but today is another day.
Am still lurking even if not posting.

LameWolf

pipkin71 wrote: »

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:

OMG:eek: It's the sort of thing I fear happening - I never, ever wear anything on my feet at home, as even the softest slippiers HURT like hell. I hope your poor paw isn't too badly damaged.

Careful_with_that_Axe wrote: »

raeh, lw I'm sorry to hear you are both having flare ups. May they be gone quick smart. I suspect I'm heading that way too, I just have to hold out until next week - after THE WEDDING OF THE CENTURY .

Thank you. Goes with the territory, I guess. I always get a flare when I'm stressed.

jazabelle wrote: »

Thank you! Yeah, who the hell wouldn’t be depressed when in constant pain? Everyone is grumpy when they have a headache or something, how would they feel if it then didn’t go? It seems a shame people have to go through so many healthcare specialists until they get one that takes you seriously.

I always look at it like if someone breaks their leg (f'r instance) they have the thought that in 6 or 8 weeks, they'll be all better and back to normal. We don't have that to look forward to. Yeah, it'd make even the most cheerful soul depressed.

Actually, my reason for posting right now is On-Topic both for money-saving and living with lupus: I try and do all my baking in one fell swoop, to economise on the amount of time the oven is on, and as a result inevitably end up overdoing it, and spending the next 2 days flat on my back. How do any of you balance this? Do you say "s*d the leccy bill" and do your baking little and often? Or do you do like me and knock yourself into next Wednesday trying to save money?

I should mention, I have veggie quiche and cherry pie in the oven as I type, bread rolls rising in the airing cupboard ready to go in straight after, and am feeling guilty because the cakes and biscuits are going to have to wait til at least tomorrow. And my back's killing me so much I've had to give in and take some Oramorph.

black_paw

jazabelle wrote: »

I just got back from the physio, who seemed to not know what to do with me when the pain is all over. He referred me to Hydrotherapy (which he told me he had done three weeks ago - so lied!), gave me some stretches then pretty much discharged me!

I am so annoyed. Physio was the treatment the Rheumatologist told me to do, and he has discharged me on my second visits without doing anything! On the first visit he just ran through my mobility etc, and today he poked me to see where I said ow!

At this point I am sick to death of getting the run around from everyone. I just want someone to take charge of my care and give me a break. I think I'm going to write a letter of complaint to the hospital about the terrible treatment I have been getting. I think I am going to request copies of my medical record letter from my doctor surgery, so I have the names and dates of doctors I have seen. Does anyone know how I go about formally requesting these, and if I would have to pay? I just phoned the doctors surgery, and she said the manager is on holiday and I would have to speak to her. When I wanted some stuff printed off from my GP at uni, they just printed it all off with no hassle at all. I do have the right to that info, don't I?

hi there jaz i have had Hydrotherapy and only lasted 2 sessions as she gave up , i nearly drowned ! no balance ..if legs off floor........but thinking of getting back in ,but not with her...found out there is a group sesssions for chronic cervical spongylosis people ..where you get the right format.now to just get on the phone........
i went on a talk yesterday about how to complaint about NHS stuff hospitals ..dentist....a few in group who find it hard to cope dealing with everything have used them and it free...it's called PALS and have office in out local hospital . for you to go ...or a phone number.they deal with the whole thing write your complaints...phone the quacks...get you on others lists..find treatment for you.get another doctor /transfer for you .they are brill .....not sure if nation wide ..i think they should be.will tomorrow check leaflets to see if nationwide phone number for you...and they phone you back ! wow
cwta still can remember the dead ducks well ( on topic here fibro ducks ):rotfl::rotfl::rotfl:

black_paw

lamewolf on topic, i have fibro cherry pie too , in fridge not as nice as your's but poor old aunt bessie does her best !