I am so tired of everything at the moment.

[InSpain]

Hi Everybody. I'm feeling really sorry for myself at the moment. I am so tired or could even say I feel exhausted. Every bone in my body hurts. I look like Michelin Man as I am bleeding in all my joints and am swollen out of all proportion. I'm wheezing like an old woman, due to my heart problems, but I can't sleep because I'm not used to the oxygen mask at night time. Physiotherapy seems like an ordeal which I can't face anymore. And to top it all I have both a new Rheumatologist and Neurologist who can only be described as utter idiots who haven't got a clue about anything – apart from PhD’s in how to insult you and belittle your problems. Hey ho life goes on.

[Lozzer]

Hi. Something I've learned from my rheumatologist is to "operate within your limits". For someone who has always been on the go this is a lesson that took me a long time to learn. Now that I can finally pace myself it helps a lot. When I'm starting to get tired i go and rest. Then get onto whatever I was doing when I again feel up to it.

I can only encourage you to do the same. The thing about this syndrome is that energy levels vary incessantly and so we need to react accordingly.

When your sleep pattern settles down a bit you will feel much better I'm sure.

[InSpain in reply to Lozzer]

Thanks xxx

[SueLovett]

I am so sorry that you are having such a bad time. I really hope you can feel a lot better soon, sending gentle hug and get well soon wishes.

I can't understand why the people who are supposed to look after us are so rude and seem to lack an ounce of compassion. Strange that so many of them are neurologists. The one I see is a rude pig, I think he wants to be the new Doc Martin.

My lovely consultant in London however could teach them all a thing or two as he is kind, empathetic and treats me with dignity. Shame there aren't more like him.

Thinking of you

Lots of x

[InSpain in reply to SueLovett]

Thanks Sue. Both are mine are rude pigs too - and I'm sure that it isn't just a coincidence!!! Wish I could find someone who is empathic I can't keep going on with all this pain. xxx

[MaryF Administrator]

Hi there, you sound very uncomfortable, and to have bad medical support on top adds insult to injury, then that mask to get used to. I am sure it will settle down. It saddens me that time after time there seem to be complaints about neurologists, - why they can't understand that perhaps sticky blood and or inflammation might have some effect on our brains, is a total mystery. I hope you feel much better soon, are they tweaking any of your medications? And could you swap the physio for hydrotherapy? Mary F x

[InSpain in reply to MaryF]

Thanks for your good wishes Mary. I'm a bit brain dead at the moment I'm actually having hydrotherapy and not physio but it's still so so painful and am feel like death afterwards. I'm off to Barcelona soon for an appointment in a private clinic to get a second opinion. Unfortunately, it's about 4/5 hours away by train and I'm just too weak to go at the moment. As for my meds the 2 idiots I mentioned before think that I, and I quote, "Only have a small amount of muscular pain" and aren't prepared to change my meds at all. It was the haematologist who confirmed that I was bleeding in my joints - however, he can only alter my anticoagulants. I don't know if anyone else has ever had Hemarthrosis but it is so painful - I can't move without wanting to cry out in pain. I'm trying to keep cheerful but sometimes it's easier said than done! xxx

[MaryF Administrator in reply to InSpain]

I am so sorry - I can see from reading this! medscape.org/viewarticle/77... How seriously painful this is. I hope the private clinic can help - can you please take somebody with you, and can you stay over and rest before the return journey.. I think go get this right you have to pace yourself...I have struggled on up to London from where I live out in the countryside, bus, train, another train and tube followed by more buses... to do it one day, usually accompanied by unwell child at times, is too much without staying somewhere you definitely need the care of and APS specialist to get all this to calm down! Please keep me/us informed of progress. I had a fish around on line, there have been papers written out of Barcelona on this very subject! Mary F x

[InSpain in reply to MaryF]

Thanks for your encouragement and continuing support Mary. I have just had a wonderful offer from a friend of ours who owns a camper van. She has offered to lend it to us so that I could lie down on the journey if I needed to, or even make the journey over 2 days if necessary. This may be the perfect solution. Also the clinic have phoned and have said that they can provide us with suitable accommodation if necessary too. Everybody is being so kind I feel very fortunate. xxx

[MaryF Administrator in reply to InSpain]

Good Good Good - music to my ears, load up some nice music and lots of things that make you happy, things are about to improve xx M

[jetjetjet]

Hi in-Spain-Mary brings a point that came to my mind !!! your meds ?? is there any governing body tat you could bring your complaints to OR talk to the Dc, you like and mtntioned and tell [HIM-HER } of the uneeded stress you are going thru . i know here in the states you can file a complaint about such issues . Have you brought these things up to any of your other Dc's that might be able to help .you shouldn't have to go thru this, when you have other issues to deal with . take the fight to them - bring attenton to there ill ways .hope things improve soon for you . --------------------- jet the bear

[InSpain in reply to jetjetjet]

Thanks for your kind thoughts Jet. I have complained until I am blue in the face, but to no avail. I think the main problem is that here there is very little knowledge about my combination of problems - especially the effects of APS. That's why I want to go to see somebody with sufficient knowledge and clout to sort all this out on my behalf. It sounds pathetic but I've simply run out of energy to do anything else for myself at the moment. xxx

[jetjetjet]

Ya i hear what your saying :-(-- i have thru the ringer the last couple of weeks - had a real bad scare thru's the 17 th . and then in E.R. sunday all day - had a doc. that tried to come on strong and when i set him straight he left, with my paper work and never came back !! i tried to hunt him down ,but couldn't find him , he must of been hiding in a broom closet -- -left E.R. with no paperwork to speak of.. but i have it now [ i went and got copies ] will be taking it to Leb. to Rhuemy . i don't want to get the Dc. in serious trouble, how ever i want to make sure this doen't happen again to me or someone else in that matter. he scewed with the wrong patient and he knew it - all he had to do was LISTEN TO ME . . i think there will be a leson well learned when my Rhuemy gets paper work on the 4 th of Feb. he was asking for it the day after MONDAY ] of course i didn't have it --but now i'm loaded for BEAR. he also X out a page and i sure i know what it said -- but i'll let my Rheumy tackle that one as i am sure he will want to know what was deleted . our Sheena said i must be a bear -- she was right -- accept this time, if you mess with the BULL you get the HORN !!!!!!!!!!! i was in serious trouble that Thurs. and sunday was like an aftershock .. This can't happen and my goal is to see that it's adressed by the powers to be !!!!!!!!!!!!!!!!!! :-)jet

[InSpain in reply to jetjetjet]

Good for you Jet. I seem to have lost my motivation to fight at the moment. I think it's that I'm just so tired and in so much pain. Roll on Spring! xxx

[travelnut]

I hear you as well. Sounds all too familiar at the moment. I think most of us get those days/weeks/months when everything is just such a mammoth uphill struggle. I am finding that my levels of patience and tolerance with everyone are so just so low these days. I just wish more people would understand that sometimes we just need to get things sorted in the best and most efficient way and how frustrating and draining it is to have to revisit old ground or keep chasing people up when you're on empty on the energy gauge.

[InSpain in reply to travelnut]

Thanks for understanding travelnut. My energy gauge is definately at an all time low. xxx

[lovemyheart]

I feel so bad hearing stories like this. I had that happen to me the last time i qas in the hospital. I called an ambulance to say i think i was having a stroke. When the ambulance arrived, the emt said i dont look like the type to have a stroke, maybe i was just tired!!!!! When i arrived the hospital (who knows i have a stroke history) brought me right in. Ive encountered all types. Sometimes we have to be the ones to educate them!!

[InSpain in reply to lovemyheart]

Too true! The last time I had a stroke the on call doctor told me I was just nervous and to take 2 paracetamol! Needless to say thanks to the quick actions of my husband 20 minutes later I was in an ambulance. When I arrived at hospital I couldn't move or speak. I had to have an emergency operation to remove the pressure which had built up in my brain due to an enormous bleed. Need I say more...!!!!! xxx

[swirl in reply to InSpain]

Totally true. When I suffer my ictus almost 2 years ago. I called an ambulance. I am a nurse, and I knew what was happening to me because I work at the ICU. Well....the answer was: She`s having a migraine. Tell her to take a painkiller and rest. If it doesn´t work, go to emergency"

I couldn´t move because I had horrible vomits and the worst headache in my life. When I arrived at the little emergency in my Village, they told me it was my first migraine.

After that, I was 2 or 3 days at home...terrible headaches...and finally went to the hospital driving by myself. There, they made me a Scanner (they didn´t want to) and told me: "You`re a miracle, you are alive despite of having a terrible and huge clot in your brain. It is because you are young and another little vein could accept some of the blood return"

Doctors don´t know anything about Huges S. All I have or feel is because I am depressed or nervous....AND IS NOT!!!!!!

[InSpain in reply to swirl]

Exactly! You know what I'm talking about! I will send you a PM later today xxx

[CanaryDiamond10]

Oh InSpain; I am so sorry you are so down and out. I'd like to say I could take it all away, or that I had a cure, or that I make it a habit of punching all neurologists in the nose... but I can't. I can only say I hope this doctor finds some answers for you and that you don't suffer any more pain. I've been to that "I don't even care anymore, what will be is okay with me because I'm just too tired!". Gene Wilder and Madelyn Kahn made a movie called "Young Frankenstein". In it Madelyn Kahn does a poor imitation of Marlena Deitrich in her famous line, with forearm across brow, dramatically posed.... "I'm soooooo tired!!". Have to see the movie - but that's exactly how I felt. Now every time I get to that place I have learned to stop before it gets to that point. Sometimes, there's nothing to stop; it just is and there isn't anything I did to be so tired and nothing I can do to be rid of it. So if it needs the time to just pass, so be it. I give it permission to take all the time it needs. I learned a long time ago sometimes, it is just not my choice. But I also learned it does pass. Eventually, I'll get back to form. Just don't do more than your body will comfortably let you. Dump the guilt of mundane things like housework. Does it make a difference if you clean one days worth of dust or two? Or whatever it takes. (within reason)

InSpain, you have a whole lot to balance at the moment and I'm so sorry. Know that it will get better eventually. Concentrate of your positivities (like a husband who had the sense to save your life, now he's a keeper). This too shall pass and better days are ahead. Sounds like a lot of yada-yada, but it rings true. Know that my thoughts are with you. I wish you the very best on your journey and send lots of positivity to keep you company on your trip.

Warm wishes, prayers and smiles.

Canary

[InSpain in reply to CanaryDiamond10]

Hi Canary. How true your words are. My husband is the best thing that ever happened to me. After reading your post I tried to focus on all the positive things that I have in my life at the moment - and there are a lot. I then took a pill to help me to sleep and have just woken up from 5 hours of sleep - can't say I feel great physically but mentally I'm raring to go again.

As for the housework my friend comes and cleans for me each week. In Spain they have a saying "Why do today, what you can do tomorrow"! What a great phrase, don't you think?!

I think that if you do decide to make a career of punching neurologists on the nose then perhaps you could fly over here for an afternoon and help me out too!!! I would love to be a fly on the wall!!!!

Seriously, thank you so much for your kind words of support, as usual, they have inspired me to move forward.

Love from here InSpain xxx

[lovemyheart]

Plenty of well wishes headed your way. I just went to Long Island Jewish and the drs there were wondering if i was bleeding into the joints. I have von willebrands and aps do you know if aps causes this too? I knew the vw could. Take care... Teresa

[InSpain in reply to lovemyheart]

Hi lovemyheart. I am certainly no expert to answer your question but as far as I understand it bleeding into the joints, or Hemarthrosis which is its proper name, is not a symptom of APS but a side effect of bleeding excessively, in my case due to a very high INR (11.9). Whereas Von Willebrands is an autoimmune disorder in its own right. I hope they get you sorted too. Thanks for your good wishes. xxx

[Jade]

InSpain so sorry you are feeling so bad right now. You certainly have too much to content with. The last thing you need is rubbish doctors too.

Do you think you would be getting better treatment in the UK? As you are British are you aren't you ble to come back here for treatment?

I know an expat who went to Spain for sun but plans to use the NHS for diabetic/ arthritic wife as it is better than Spain. His adult cerebral palsy son is staying here as the the care package is better in the UK.

Just a thought. Xx

[InSpain in reply to Jade]

Hi Jade. Yes I am an expat but I didn't come to Spain for the sun! I have lupus and don't tollerate sun at all well!

As my husband is Spanish I am registered in the Spanish health care system and wouldn't be able to receive any treatment on the NHS at all unless I paid. As you can see in some of the above posts I am far too ill to travel anywhere at the moment. So fingers crossed for my trip to Barcelona! Thanks for your good wishes xxx

[lovemyheart]

Thank u InSpain and i will pray for u that all goes right for u

[InSpain in reply to lovemyheart]

You're welcome xxx