Welcome to my PGP/SPD blog: Links and Info:



SPD is Symphysis Pubis Dysfunction.


PGP is it's appropriate name: Pelvic Girdle Pain. (although I disagree as many do and feel this name is too general.)


I have created this blog about my story to raise more awareness in regards to PGP and SPD with links to the appropriate support sites to make your recovery as easy as possible.


The main websites I have found for you to look at now are:


The ACPWH have changed their website and here are the new links to access the 2 SPD documents you need to read which will offer you help when you have been diagnosed with SPD:

http://acpwh.csp.org.uk/publications

http://acpwh.csp.org.uk/publications/pregnancy-related-pelvic-girdle-pain


http://www.pelvicpartnership.org.uk/

(This is a charity support group here to help you as a sufferer.)


http://www.facebook.com/group.php?gid=137142035812&ref=mf

(Our own official support Group on Facebook JOIN US, RECEIVE HELP, INSPIRE OTHERS)



More websites you may find helpful:


NEW CHARITY: SUPPORT PELVIC DYSFUNCTION: http://www.supportpelvicdysfunction.co.uk Donate online, receive help and support one on one and read helpful the helpful guides provided to help you cope with SPD and other pregnancy related complications.


Study by Royal College of Midwives-Evidence-Based Midwifery, Sept, 2007 by Vanda K. Wellock, Margaret A. Crichton


http://findarticles.com/p/articles/mi_6862/is_2_5/ai_n28445225/


Link about DSP and SPD/breastfeeding.


http://www.plus-size-pregnancy.org/pubicpain.htm#Should%20I%20stop%20breastfeeding%20if%20I%20am%20still%20experiencing%20pubic%20pain%20postpartum


More info on SPD and a link to a support forum to talk to others about SPD.


http://www.madmums.com/GH_ShowArticle~HID~147.htm


Community Legal Aid: (If you need legal advice in any situation)

0845 345 4 345.



Another suggested link that my be helpful: (Scotland)

http://www.pelvicinstability.org.uk/index.asp


Additional links which are useful (Thanks to a lady from babycentre and all the other contributors! You know who you are and you have been fantastic!)


http://www.nice.org.uk/nicemedia/pdf/CG62FullGuidelineCorrectedJune2008.pdf and http://onlinetog.org/cgi/reprint/8/3/153.pdf


SPOON THEORY:


But You don't look sick?

Copyright: 2003 by Christine Miserandino butyoudontlooksick.com

A story that helps the disabled not just SPD sufferers:

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf



It is important to NOTE that PGP formerly SPD is not just caused during pregnancy (1 in 4 women) and that many sportsmen and women also suffer from PGP / SPD.


Hope you find this information helpful and pass it on and invite others, as severe cases are defined as a disability and can be made permanent condition(s) if not treated correctly.


Awareness:


Due to lack of awareness that this site exists, MANY women are sat at home now, MANY pregnant and suffering unknowingly with SPD and/or joint conditions. As a founder of a start up charity I cannot advertise. I am merely asking you as a reader of this blog and supporter of the new SPD charity, Support Pelvic Dysfunction, to share this site with others, maybe friends on your facebook? twitter? Anywhere, by doing so YOU WILL be HELPING many more SPD sufferers like YOU and those that are suffering in silence right now not knowing we are here to help. We need YOU to help us, to help them. :)


We would like to put out a huge THANK YOU to all those women on our support groups and pages, on facebook, who are all discussing SPD and helping one another, and to thank ALL those who are sharing this blog and the charity website Support Pelvic Dysfunction.


Because of you, Support Pelvic Dysfunction receives many emails from helpless women desperate to know if they will re-cover and emails from those that have unknown underlying joint conditions, to which we can assist to get them a REAL diagnosis and help!


Dont suffer in silence!

Email: help@supportpelvicdysfunction.co.uk


(This blog is not affiliated with the charity, however as the founder of the charity, this is my personal REAL, TRUE TO LIFE story, that i have put in place to help others!)



Please enjoy my personal story in the form of a blog below.

Thursday, 1 December 2011

PLEASE HELP CARERS GET THE HELP THEY SHOULD HAVE HAD: (TAKES LESS THAN A MINUTE)

PLEASE SUPPORT ALL SPD SUFFERERS PARTNERS THAT BECOME 24/7 CARERS! PLEASE TAKE 2 SECONDS TO SIGN THIS PETITION AND VERIFY YOUR SIGN UP BY CLICKING THE LINK THATS SENT TO YOUR EMAIL!



PLEASE REPOST THIS ON YOUR YOUR SOCIAL NETWORKING SITES AND RAISE AWARENESS!
AND DON'T FORGET TO SIGN THIS IMPORTANT PETITION, THIS WILL HELP FAMILIES LIKE MINE GET WHAT WE DESERVE!!! http://epetitions.direct.gov.uk/petitions/20542 The Government should increase Carers Allowance to reflect the amount that carers save the nation by not relying on the NHS

CARERS ALLOWANCE IS CURRENTLY AROUND ONLY £55 A FORTNIGHT FOR A CARER WHO WORKS 24/7 WITHOUT ANY BREAKS BECAUSE THEY CARE FOR A RELATIVE LIKE MY HUSBAND DOES. CARERS THAT WORK 9-5 AND NIGHTSHIFTS FOR NON-RELATIVES GET £800-£1000 A MONTH!!! (ANNUAL SALARIES FROM £12K-£15K AND UP!)

HUGE DIFFERENCE FROM £110 THE CARERS ALLOWANCE GIVES!!!

P
LEASE TAKE 2 SECONDS TO SIGN THIS WITH YOUR NAME, EMAIL AND ADDRESS!!!! AND REMEMBER TO LOGIN TO YOUR EMAIL AND CLICK THE CONFIRMATION LINK TO VALIDATE YOUR SIGN UP!!

THANK YOU SOOOO MUCH!

THIS IS SOMETHING I HAVE BEEN TRYING TO RAISE AWARENESS OF FOR YEARS!

Monday, 28 November 2011

Still seeking 3rd Trustee! ITS NOT TOO LATE TO APPLY!:


Applicants for volunteer and trustee positions:

Please send the following questions filled out to:
help@supportpelvicdysfunction.co.uk

Please note: We have additional meetings with cavos but at this time they are not mandatory for trustees. (trustees may be welcome to come along to some of them, or all at a later date).

Required information via email or post.
POST: Please request corresponding postal address by calling 07721656764 on Mondays OR Fridays, 11am-4pm.
Suggestive advice line open from 10am-5pm on same days.

(The following information is mandatory whether the applicant is known by us or not.)



*If question is starred, it is mandatory.
(If you do not have a landline, please state in answer so question has been answered, however you must have atleast one mobile or telephone number you can put down so we can contact you.)



*Full name:

*Marital Status:

*Date of birth:

*Address and postcode incl town and county:

 Phone numbers:

*Landline:

 Mobile:

*Do you have SPD?

*(only if answered yes to previous question)
When did it occur, date occured mm/yy and if pregnant please state in weeks.

*Other conditions:

*All aids you use: e.g crutches...

*How many children do you have?

*Which child (if during pregnancy) did you develop SPD?

*What interest do you have in the charity your applying for?

*What, in your own words, does this charity do?

*Why do you want to be a volunteer or trustee for support pelvic dysfunction?

 Email address:

*Do you work?

*If you work how many hours a week?

*What qualifications do you have?

*What work experience do you have?

*Have you completed any 1st aid courses, if so when, where and what was issued?

*Have you completed the workbook for Vulnerable adults, if so when and where?

*(This question only for trustee applicants)
 Can you attend 3 mandatory meetings a year?

*What other time (excluding meetings) can you offer the charity?



Volunteers will be welcome to join in meetings if they wish at a later date.

3 meetings a year is mandatory for all trustees, however there may be additional meetings called to discuss important matters as they arise.

This is a start up charity, but will at all times be professionally run.



Thank you for your application and interest.


This is information needed from all people interested in volunteering or becoming a trustee.







Kind Regards,

(on behalf of)
Support Pelvic Dysfunction
help@supportpelvicdysfunction.co.uk

DISABLED ARE NOT EQUAL CITIZENS:

WE ARE NOT EQUAL TO ABLE BODIED PEOPLE, WE ARE NOT WORTH IT:




I AM MORE THAN UPSET.


How many more rights do we have to lose as disabled individuals?


COURSES AVAILABLE IN MY AREA: are FREE for people on JSA, and ESA (those worthy as they are capable to work) but NOT disabled individuals or disabled charity workers or volunteers.


WE DISABLED HAVE TO PAY, FOR A COURSE THATS JUST MIXED CRAFTS! £3/hr, but when we are not receiving much in the form of benefits and are not able to work, how do we cope? This seems a small fee but it shortly adds up for those who cannot work, cannot improve their lives or financially progress.


How do we meet other disabled people or MAKE NEW FRIENDS?


In our area there are no DISABLED coach trips or meeting groups! (And especially not wheelchair accessible for any of the groups that do exist)


I am working to set up the first SPD support group, if i ever get my own transport since there is no DISABLED TAXIS, and the only transport available is for the town only.


THE BUS COMPANIES: SAY THEY ARE AIMING TO BE DISABLED / WHEELCHAIR ACCESSIBLE BY 2013! *fingers crossed*


THE CINEMA nearest to us has 3D screens that i cannot access because they are not disabled accessible, no wheelchair ramps, stairlifts and no lifts as its a listed building. Why no ramps?


The 3rd small cinema room they state will be made 3D equivalent by 2012.


Will our whole lives be waiting for the world to catch up to the fact there are still a minority (becoming a majority especially with SPD and underlying conditions being diagnosed on a rapid basis), still a minority that cannot access their services!


Apparantly all i have been working towards, freedom, the freedom people take for granted every day, i am not allowed to have. I have been stripped of my rights as a human being completely now and they may aswell have put a plan in to shoot all disabled people in wheelchairs, coz theres nothing left for us to live for, other than our families, which we are housebound and not allowed to do anything we are capable of doing, so we have been stripped of our abilities because of disability and stripped of the rest because of NHS, COUNTY COUNCILS and now Disabled Car Depts!


I am more than gutted right now.     :(


Whats the point of DVLA deeming me SAFE TO DRIVE if Disabled Car Depts wont let me?  (previously told me otherwise!)


Disabled Car Depts told me before i am eligable for a grant for a WAV, 1)im disabled in wheelchair, 2)have 24/7 carer and a son. 3)On higher rates of both DLA (which i wouldn't be on if i could work or be sole parent to our son) 4)on benefits.
YET the gentleman i spoke to today says i HAVE TO BE ABLE TO WORK or BE SOLE PARENT to be able to get grant for Wheelchair Accessible Vehicle from Disabled Car Depts. So im not allowed to drive and get the free lessons i was promised (under 25yrs) because I AM DISABLED.


AS IF IT IS A CHOICE!


He says i am NOT ALLOWED THE RIGHT TO DRIVE, by saying i have to be passenger and my husband has to drive me, when they wont give him free lessons because ONLY THE RECIPIENT of DLA can get the free lessons. DESPITE DVLA DEEMING ME SAFE TO. (i have spent 6months following what they said already, not to apply until i have provisional etc etc.)


My husband does not drive because i was the one that did the lessons prior to SPD in 12weeks pregnancy! And because i cannot work due to disability and because husband is my 24/7 carer we have no money to afford lessons. It's true!


ITS A PARADOX NOW.


HE NEVER SAID CRITERIA HAS CHANGED BUT IT HAS BLOODY CHANGED IF THESE ARE THE RULES NOW!


Dr. and DLA made us homeless at 35wks pregnant, its no secret!


When were disabled people 5th class citizens or lower? Were they ever equal to 1st?


SO WE CANNOT GET A CAR THATS SUITABLE FOR ME, YET THEYLL LET ME GET A Disabled Car Depts CAR I CANNOT DRIVE AND WASTE MONEY?!?!


ITS NOT ME WHO PUTS THE PRICES UP FROM £600 TO £30,000 JUST BECAUSE ITS WHEELCHAIR ACCESSIBLE!!! THATS PENALISING US! WHY HASN'T ANYONE DONE A STORY ON THIS?


(SAME AS TAXI'S, ITS £3.20 FOR A ABLE BODIED PERSON, MAKE THAT £14 FOR DISABLED-IF YOU EVEN HAVE DISABLED TAXIS AVAILABLE IN THE AREA!)


OTHER LOSS OF RIGHTS:
What's the point of council giving us 1 fire exit instead of 2 (WE ARE NOT ALLOWED 2 RAMPS, ONLY 1 BECAUSE WE ARE NOT THE SAME AS ABLE BODIED PEOPLE AND WE WON'T BE MISSED IF WE CANNOT ESCAPE, IF THERE IS A FIRE AT OUR ONLY EXIT) and wait 12 months for adaptations. (SUFFER FOR 12MONTHS WITHOUT ACCESS IN OR OUT HOUSE, UPSTAIRS, NO ACCESS TO LOO OR BATHROOM)


THIS IS THE 2011 TRUTH FOR THE DISABLED behind the scenes, whilst THEY PRETEND publicly to be an investor in people and help people. REALLY THEY ARE stripping us of our rights and making us suffer for 12 months without access to basic human rights like toilet, bathroom, upstairs just because THEY DONT HAVE a suitable bungalow.


WHEN DID WE LET THEM TREAT US LIKE THIS?


When did we let them make us live like this? Who will stand up now and say the truth if no one else will? i will. I have lost everything else and its not just me that suffers, its my husband and son. Do they deserve this too?

NHS: Treat us like scum when we have not been diagnosed, treat us like psychiatric patients just because we have an invisible condition, that they choose NOT TO TEST FOR and INSTEAD treat us with abuse, malpractice and lies on our notes.

And who are WE to take on a council? The NHS? The Disabled Car Depts? The GOVT.?

HOW can we?

We have been left with nothing but a lot of traumatic stories, experiences people pretend they already know about because they don't want to think about them?!

That people don't want to know because as long as they do not go through it they are OK. And when they do go through it are HELPLESS to do anything, because the LAW doesn't protect disabled people over the age of 18years, there is no legislation in place to protect us. Just a workbook known as no secrets workbook.

ALL THESE LIES ABOUT DISABILITY DISCRIMINATARY ACT, WE CANNOT AFFORD TO TAKE ANY OF THEM TO COURT UNDER THAT ACT OR OTHERWISE!

3K MINIMUM! Did people even know that?

THEY HAVE LEFT US NOTHING TO LIVE FOR!

BECAUSE THEY ARE NOT GIVING US ANYTHING BECAUSE WE CANNOT WORK, BECAUSE ARE IN A WHEELCHAIR, DESPITE WORKING AND BEING IN FULL TIME EDUCATION FOR MOST OF MY LIFE!

ONLY THIS IS NOT JUST MY LIFE! ITS THE LIVES OF MANY!

WHEN WILL THIS STOP? WHEN WILL THIS CHANGE?

I can only see it getting worse from here.... slippery slope system to dispose of those who cannot contribute to society just like the nurses pushing women to KILL their babies if there is a risk of them being DISABLED!!!

WE ARE PEOPLE, NOT TERMITES!


Disabled Car Depts: Cannot give actual name due to being a respectable blogger. All names, places and identities are kept confidential.


PLEASE NOTE: Disabled Car Depts have decided i may still be eligable because i do the charity work that i do. So there may be hope for me still.


However it is still really sad that others are still suffering and there are SO MANY situations we are less than second best! Less than fifth best!


We should be able to get more help than this!

Saturday, 19 November 2011

Living with SPD and HMS. SURVIVING ABUSIVE DR'S!

I know that living with SPD is difficult enough, but mix that with a joint condition and it is a whole new ball game.


But, that does not mean that you cannot get the help you deserve. http://www.hypermobility.org/  are a HMS Charity that has guided me through some of the tough times with HMS.


If you become a member like i have, you receive lots of important and relevant information, and if your blessed to be in an area where they meet up, in which i am not, then you can discuss things with others who are in the same situation.


I cannot update anything else as the Health Psychologist Department have not been in touch despite the fact that i was informed ONLY the Pain Psychologist Dept, have dismissed me.


I am losing faith and losing patience and i am very grateful to be able to receive counselling yet again via my GP. But this counselling is not the psychology i need to be able to accept this disability to the full.


Many women struggle accepting SPD, HMS and even if for a short temporary period of time, women need to get over what they have experienced. As i am stuck with both conditions i have to try and help myself as no one else wants to help me or put me first, which is yet another reason why i started the SPD charity Support Pelvic Dysfunction.


Women like us, should not have to go through these experiences unsupported, especially when in many cases, and in mine, we have endured malpractice and abuse from Dr's and have been labelled wrongly in the notes. As abusive, as Deluded as my ex Gynae stated. Deluded. Is there really any need for that? Well he also said that i would never be diagnosed with HMS, and he was proven wrong, why? Because HE was the one that ignored my SPD diagnosis made on 16th July 2009. 


We remember this date clearly as transport took us to the wrong hospital and the lady there saw us and gave me crutches that i was not measured for. 


HE ignored that and made the most disgusting assumptions that i had self referred to Social Services, i had not. A local hospital Wheelchair Dept Referral was made by a different physio and it was all dealt with through Drs and professionals.


And with all the evidence in his notes, but too lazy i can only assume to read them, he went and lied to Social Services Safeguarding childrens department to tell them i was an unfit mother, that referred myself to social services and made up the SPD claim. (ALL medical notes prove otherwise - unless the NHS professionals failed to document appointments- which i doubt, as they have to, do they not?) Despite this fact, we still had to go through an ordeal of an investigation in the FIRST few days we should have been enjoying our son at home!


Not only did this man rob me of my pregnancy, he robbed me of my 1st few days at home too, and they did not deal with my complaint legally, appropriately or with respect. I was NOT allowed a meeting with them and PALS was told to no longer get involved after i had phoned them about the abusive investigation report in response to my SERIOUS complaint.


It was not just the first few days either, the investigation took time, precious time we should have had with our son, in our new home, with no access to bathroom and toilet and sleeping in the living room with a commode. (17 months we waited for adaptations). (This is the same Gynae Dr. that refused to write to DLA and confirm what my GP and Physio had already confirmed amongst others, which lead to a delay in financial benefits which made us homeless when i was 35 weeks pregnant, not only that either, lost my business i had set up from nothing, my job for a well known and reputable Dr and Inventor, and my husbands job as a Factory Operative (Nightshifts) as he had to become my full time carer.) All this from 12 weeks as thats when i woke up one morning and just like that, i couldn't turn in bed and then the pain was unbearable from that point on. (ALL documented as it happened in this blog). 


The report (reply to my complaint) stated that no nurses were present to confirm that this gynae had humiliated me by not allowing my husband to pull my underwear up from my ankles after an internal examination. This contradicts itself as nurses HAVE to be present during times as such, and there are many more flaws including the abusive language used against me.


WHY not take him to court if he was sooo bad?? 


Ill tell you. Because although i am trying to get over all of this ordeal, i do not wish to face this abusive man again because just seeing his face makes me feel sick, and i have verbal reports from over 50 women that claim he tells women that their baby could have died and that he saved them, which explains the only reason he could be receiving compliments and gets to stay and be an abusive Dr.


If authorities CANNOT protect you YOU MUST PROTECT YOURSELVES!


HERE IS A GUIDE I PUT TOGETHER TO PREVENT YOURSELF FROM BECOMING A VICTIM OF ABUSE FROM A MEDICAL PROFESSIONAL:


1) Always be adament that what they have to discuss about your case or you as a patient is always discussed infront of you. (my Dr mis informed staff on wards that i was able bodied and i was left falling constantly whilst heavily pregnant, left without food, with no commode facilities and left to struggle to get in and out of bed!)


2)If you feel uncomfortable about the way they are treating you or what they are saying to you, you have every right to change your Dr. Even if they protest this, you have to fight and stick to your guns!


3)I learned the hard way, SPD is AGONY during examinations, and my DR examined me EVERY TIME i saw him because it was vital for the baby to survive i was told by him. When he did so he would ask me does it hurt here, here? etc etc. And i would be honest and say yes! I was screaming in agony, no ones THAT good an actress! He would tut and say "thats not spd pain" no its coccyx pain i later found out, due to SPD.


So make sure you are NOT enduring examinations and PAIN just because your DR is skeptical!


4)Keep a log/blog or diary to make sure you have everything written in writing, although i am afraid to go to court due to their made up claims im abusive etc. and because i couldnt emotionally cope with his face, people have 3 years to take anyone to court and having things written down is VITAL, especially names and dates (if not a blog as i dont advise distributing areas or names in public blogs) Money is not important to me, my family and their health is, so i am trying to put it all behind me.


5) NEVER go alone! Take a friend, take your partner, take your mother, NEVER go alone, make sure you always have a witness! TO EVERY DR/gynae visit.


6)Make sure you are in a hospital that has an SPD policy in place, not every hospital at this time does, but you can ask at reception or Gynae reception, or ask a Midwife. You are also allowed to view this policy.


7)Ignore any DR who claims your FAT is causing problems, or that you are a hypochondriac, they are not willing to do their job and they won't make exceptions, so change them straight away!


8)If you need a wheelchair you are eligable for hospital transport, don't let any Dr have a go at you about this facility, it is there for wheelchair users (who can take their partners if they need a carer, and/or child ) if no other transports available. We have no car at this time, and although i am looking into motability car once i get my provisional, my EX Dr, Same one as mentioned in all of this, shouted at me and my husband on a busy ward, where everyone could hear, (no confidentiality at the best of times) and complained that i should not be in a wheelchair and that i should not be wasting NHS money by using transport, and instead i should pay £50 per taxi to get there. (DESPITE me not being able to get disabled accessible taxi's or afford them if they existed DUE TO (as mentioned perviously) this DR refusing to write to DLA and therefore causing us to become homeless at 35 weeks pregnant, i lost my business and my job, and my husband lost his job having to look after me)-If only he would have read the medical notes and written to DLA, and if only he had sent me to further SPD experts who would have confirmed SPD.




9)If a Physio is not prepared to help you because they believe ALL SPD goes away after birth, then you need to see a different Physio in womens health, Some do get better, but the ones who find themselves with severe pain and mobility problems may have underlying joint conditions or conditions causing SPD to stay, get the crutches and wheelchair if you need them! Ask to be referred to an OT and get your house adapted with movable and storable adaptations to get you through! Then if you do not recover you have them to continue to help you, and if you do, you can return them.




10)Make sure that you see a physio that knows about SPD and get your diagnosis, once diagnosed seek manual therapy, acupuncture and other things that help you, and more importantly seek the tests that you will need if SPD continues post birth. These tests are a STORK X-RAY (stand on one leg scan) of the pelvis and is the only one that can show up SPD as your in asymmetrical position, and rheumatologists etc for any underlying joint condition tests like HMS (HYPERMOBILITY SYNDROME), Fibromyalgia, Ehlers Danlos Syndrome, P.o.T.S and so on.




This is your 1-10 Guide, once you have your tests and everything has been diagnosed you then have concrete evidence to apply to DLA, if your refused, APPEAL straight away, this is VERY COMMON.


LAST AND FINAL IMPORTANT NOTE:
MAKE SURE YOU ARE AWARE OF WHAT YOU CAN AND CANNOT DO DURING LABOUR WHEN YOU HAVE SPD:




Best ways to recover:


1- keep your legs in a symmetrical position and make sure that they are measured so when you have pain relief you know how far they can widen prior to pain kicking in. (As once you have pain relief you wont be aware)


2-NO STIRRUPS


3-DONT REST legs on nurse or nurses shoulders.


4-NO lathatomy position.


5-No intervention if baby isnt coming out, go straight to C-section, as i have found it common that cords get tangled and you want your baby to come out safe. As well as that any interventions including forceps can worsen and lengthen your SPD.


6-Keep in a comfortable and symmetrical position at all times, even if on all fours is working for you.


7-IF you need a C-Section, make sure the surgeons know that you have SPD and that your legs need to be taped together or kept in the same symmetrical position at ALL TIMES.


8-Take your time to recover, SPD victims find it very painful to try and stand post c-section and some post birth. Plenty of rest. Take it slowly and if you need your wheelchair or crutches state so.


9-I have a birthing plan on this blog, click birthing or birthing plan on the right, this is an example and you can use it to write yours. This makes sure ALL medical staff are aware of SPD as shift changes can lead to confusion. LAMINATE it! (Birth can get messy) And bring atleast 5 copies!! Keep some in your actual notes, in the file at the bottom of the bed and keep one at your bedside table! 




10- ALWAYS make sure the buzzer is within reach at all times, as nurses dont like it when you have to shout for them, even if your disabled or ill with SPD.






All of this is suggestions as i am not a medical professional however i AM a victim of HMS and SPD, and i HAVE experienced all i have declared and the evidence is provided when you follow my story on this blog.


I have studied SPD since, for 3.5 years now and I have founded a charity to try and help women and prevent the incidents, rudeness, disability discrimination, and malpractice and abuse re-occuring to more innocent victims of SPD.


SPD is NOT a condition people would WANT to fake, nor is it a GOOD thing.
Its life changing in a very negative and destructive way and ALL SPD victims HAVE to recover from their experience of having it, or accept they have it if longer term, for the sake of their child(ren) and families!


Yours Truly.


The lady behind it all.


Mrs. S.


<3


P.S. No names, places or personal information is provided at any part of this blog about any of the professionals mentioned or where they practice. This is because who they are, are not important, what is important is that people like this exist all over, and we need to be aware of people's experiences with them and how to deal with them and change things, so that you can have the best experiences possible and prevent abusive people from taking advantage or  abusing you for longer periods of time. I thought i could trust this Dr. and it was devastating, but if i had seen sense and realised that he was doing what he was behind our backs INSTEAD of DEFENDING THIS DR, to my midwife and others, then we could have changed Dr's sooner and avoided HIS ABUSE!

Wednesday, 21 September 2011

Health Psychologists:

Well after having me in the system over 3 years and missing me out, i finally got an initial assessment with one pain management health psychologist (i will call A) when the referrel was made to psychologist B.

After listening to me and seeming to want to help A stated that A would be having a meeting with B in 3-4 weeks and will be in touch afterwards.

Having previously felt suicidal and still do when i have times i feel really low or have had major problems, i discussed options with A and A stated that they have no services to help anyone who are suicidal at any time and that the person should call 999 or visit A+E when feeling suicidal.

This really hurt me as i was sent to A+E recently with PCOS -potentially- cyst pain / gynae related pains in my right side, and had been dealing with a specific dr who said he would operate when i was no longer fat. If i am honest i am not Fat, i am a little overweight but my BMI states that i only slightly obese. Anyway i lost some 2 stones and he withdrew his promise to operate via lathoroscopy.

 (May not be spelt correctly, sorry)

Anyway i was in agony and on gas and air and had literally and very seriously, had enough. I told the Dr if he was unwilling to help me he needed to get a Dr who would as i need help (still do) and i still have not got the 'new' gynae Dr as i was too unwell with my joints when my appointment finally arrived 3 months later.

That same night though, having been in all day i confided in the Dr and stated i would end my life if sent home because i cannot cope with the pain anymore, it was too much and i had had that pain for a long time! The Dr did not care and said it was psychiatrists i need and because he was from the same hospital as my ex consultant i feel he has taken a leaf out of his book and got wrong information about me as he did not even know or care i had been diagnosed with Hypermobility Syndrome!!!

Psychiatrists number 1021 and 1022 arrived and said i was not their problem as they cant help as its a gynae i need as im only suicidal due to pain!

I was sent home and if not for my husband and family i would not be here today!

I have to help myself as no one else cares.

Back to Psychologists, they finally got back to me after i had left a message with B, and anyway, A phoned and stated she would like to discuss my case with C (a psychologist i had seen about something else back in 2008) and I agreed.

But i have heard nothing back and i hope they do not send me to C as it is in fact B i need to see and i have waited so long and they never stated they would need to speak to a C at all!


A stated that A and B's concerns were that they do not know how i would respond to short term help, and i said short term is better than none and you won't know unless we try it!!! Three years i have waited, i am desperate, as i am, and need your help.

So now im back in the waiting game, and i dont think they can offer long term help but i told A that short term has helped me and A will only find out the same as i have told her from C.

My son is coming up two and he is perfect for his age, speech, cognitive development, motor skills etc. Perfect, and all A kept asking about was my son! He does not need any help, i need the help and i am fed up as he is also safe and in a safe and warm, loving environment!

I still use the anti-smacking, conditioning, token economy, time outs, distraction and ignoring techniques for tantrums from my previous work experience and education and i still have the BTEC national diploma book in early years.

A made me define all my experience and everything as if she had done nothing but ignore everything i had told her in the initial meeting, and i am gutted!

It is not my son that needs anything, all i need is someone to give me SOME time, to help me ACCEPT this disability!!!

Frustrated and feeling more and more alone, exhausted and fed up.

I do not care i am going to be honest, even though i am embarrassed, i have not had a proper bath or shower for about a month (flannel washes) and i have not washed my hair in 2 weeks because i could not due to my joint flare ups, i was bed bound downstairs on a sofa bed for the whole of August 2011, and i am still very ill. (hate not having downstairs toilet, just want to feel 'normal' or average and independent)

i need help soon.

There is NO home start to help us in this area or anything, thinking about it we have an OT assessment we are waiting for, but it might just be easier to move, this is because we can move into a property that meets my needs by having a downstairs toilet, and it might also have ramps etc, but we are needing the ramps changing here anyway as the metal grid holes are sharp and my two year old likes to poke the holes and has cut his fingers before and its really upsetting me, and were being measured for a new stairlift anyway as this one is breaking all the time so if we need those here, may aswell get them in a property that CAN be permanent and meets my needs!

It would mean we would never have to move again!

And life would be sooo much easier for us a family.

We're just worried and nervous with the stress of moving but people are right, theres no point keep patching this one up and getting stressed when we can move into one that can be adapted and suitable for my life, and my family's.


Definitely something we are considering....

Hope we can get help and things and im almost crying now at the thought of having a proper house, my needs met and our lives being so much easier!!!

We have no where to store the commode or wheelchairs or scooter here, and the cupboard under stairs, we had another look, may be too small for a toilet anyway! Maybe the OT is definitely right and moving would solve all our problems!

*fingers crossed*

Guess we had a very stressful move when we moved here and its put us off moving again as it was rushed, i was 35wks pregnant, we had no benefits as they were all pending, no fridge, no cooker, and a million and one additional problems, the house we havent decorated and have partly carpeted, downstairs is rugs etc, and this house has no rooms decorated at all, theyre all a state, and we may get a home with atleast one room done, but thats little things we could try and sort later. Its the fact we had so many problems moving and had to do so much all at once and had problems with BT charging us and SKY etc and on top bailiffs, many bailliffs from previous tenents that has gone on for 3 years as they are STILL illegally using this address to get loans! Don't know how they do it!!!

This time we move though, we have a choice, and we can do things step by step, and we dont have to accept the 1st thing offered, especially if it doesnt meet our needs, layout wise etc. So things CAN be easier but i know its still stressful.



*FINGERS REALLY CROSSED*

PLEASE wish us some good luck!!! <3

The council and social services have been great and so helpful so far and i hope that they can continue to support us throughout the move and adaptations etc.

Lets see :)

Feeling hopeful, and dreaming of a real life as a proper family in a home that can help us live our lives much easier....

Another Condition...

PoTs:

Well i have found out that i have another condition linked with Hypermobility Syndrome, via a Hypermobility Charity known as HMSA.

Its part of Hypermobility in a way and I have often wondered why i get blurred vision, problems swallowing dry chips and food and having really low blood pressure at times, mainly after eating and after standing.

Here is the condition and information posted on Wikipedia about it, its known as PoTs: (long information to come:)

"Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia,[1] more specifically orthostatic intolerance, in which a change from the supine position to an upright position causes an abnormally large increase in heart rate, called tachycardia. Several studies show a decrease in cerebral blood flow with systolic and diastolic cerebral blood flow (CBF) velocity decreased 44% and 60%, respectively.[2] Patients with POTS have problems maintaining homeostasis when changing position, i.e. moving from one chair to another or reaching above their heads. Many patients also experience symptoms when stationary or even while lying down.
Symptoms present in various degrees of severity depending on the patient. POTS can be severely debilitating. Some patients are unable to attend school or work, and especially severe cases can completely incapacitate the patient.

Symptoms

The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt.
This tachycardic response is sometimes accompanied by a decrease in blood pressure and a wide variety of symptoms associated with hypotension. Low blood pressure of any kind may promote the following:[3]
Chronic or acute hypoperfusion of tissues and organs in the upper parts of the body are thought to cause the following symptoms:
Autonomic dysfunction is thought to cause additional gastrointestinal symptoms:
Cerebral hypoperfusion, when present, can cause cognitive and emotive difficulties. Symptoms that persist in the supine (recumbent) state are difficult to attribute to "cerebral hypoperfusion"
Inappropriate levels of epinephrine and norepinephrine lead to anxiety-like symptoms:
Symptoms of POTS overlap considerably with those of generalized anxiety disorder, and a misdiagnosis of an anxiety disorder is not uncommon.
Prolonged inactivity of any cause, especially when much time is being spent in the supine (recumbent) position, will lead to a diminution in the usual orthostatic reflex. In other words, chronic inactivity with frequent assumption of the supine position will lead to the hallmark signs of POTS. This raises the question as to whether, in some cases, POTS is actually an epiphenomenon, and has resulted from prolonged inactivity. Since many POTS sufferers feel compelled to remain supine, the potential for a vicious cycle is obvious.

Associated conditions

  • POTS is often accompanied by vasovagal syncope, also called "neurally mediated hypotension" (NMH) or "neurocardiogenic syncope" (NCS). Vasovagal syncope is a fainting reflex due to a profound drop in blood pressure. Autonomic dysfunction that occurs with these disorders causes blood to inappropriately pool in the limbs away from the heart, lungs, and brain. The combination of misdirected bloodflow and hypotension will invoke syncope. Tachycardia associated with POTS may be a cardiac response to restore cerebral perfusion.
  • POTS may be a cause of chronic fatigue syndrome in patients that exhibit signs of orthostatic intolerance. Treating POTS will greatly improve or even eliminate disabling fatigue for these patients.
  • Some patients with fibromyalgia complain of dysautonomia-related symptoms. Treating these patients for POTS will often improve myofascial and neuropathic pain.
  • Autonomic dysfunction is most likely responsible for irritable bowel syndrome in many patients as well.
  • Patients with Ehlers-Danlos syndrome may also have POTS. Joint hypermobility is a feature of the most common subtype of Ehlers-Danlos.
  • Some POTS patients experience symptoms associated with restless leg syndrome. Treating POTS should also relieve these symptoms.
  • Some findings link this with hypermobility
  • A small percentage of pediatric cases of POTS have been associated with moderate to severe memory loss.[6]

Causes

The causes of POTS are not fully known. Most patients develop symptoms in their teenage years during a period of rapid growth and see gradual improvement into their mid-twenties. Others develop POTS after a viral or bacterial infection such as mononucleosis or pneumonia. Some patients develop symptoms after experiencing some sort of trauma such as a car accident or injury. Women can also develop POTS during or after pregnancy. These patients generally have a poorer prognosis.
In one large test, 12.5% of 152 patients with POTS reported a family history of orthostatic intolerance, suggesting that there is a genetic inheritance associated with POTS.[7]
So far no one has provided an explanation for POTS which is applicable to all sufferers, however there are many theories;
Alpha-receptor dysfunction may be occurring in some POTS patients.[8] Alpha-1 receptors cause peripheral vasoconstriction when stimulated. Alpha-1 receptor supersensitivity may be causing dysautonomia in some patients.[9]
Beta-receptor supersensitivity may occur with hyperadrenergic states in some people with POTS.[10]
Hyperdopaminergic states may be the underlying problem for some people with orthostatic intolerance. Some patients have been found to have a significant increase in upright dopamine levels.[11] Free plasma norepinephrine also tends to be higher in these patients.
Reduced venous return is one of the main mechanisms that causes POTS symptoms. Venous return can be reduced due to conditions such as low plasma volume (hypovolemia), venous pooling and denervation. A hyperadrenergic state may result as the body attempts to compensate for these abnormalities.
Sympathetic Overactivity is observed in many POTS patients. The sympathetic overactivity can be secondary to a number of factors, some of which may be peripheral denervation, venous pooling, or end-organ dysfunction. Sympathetic underactivity can also occur in some forms of orthostatic intolerance,[12] such as pure autonomic failure.
Recent studies have described a subset of POTS patients that appear to have elevated angiotensin II levels coupled with paradoxically reduced absolute blood volume, signs of increased sympathetic activity and reduced peripheral blood flow. This subset of POTS patients appear to have abnormal catabolism of Angiotensin II that may contribute to reduced blood volume and orthostatic intolerance.[13][14][15]

Diagnosis

POTS can be difficult to diagnose. A routine physical examination and standard blood tests will not indicate POTS. A tilt table test is vital to diagnosing POTS, although all symptoms must be considered before a final diagnosis is made. Tests to rule out Addison's Disease, pheochromocytoma, electrolyte imbalance, Lyme Disease, Celiac Disease, and various food allergies are usually performed.[citation needed] A blood test may be performed to verify abnormally high levels of norepinephrine present in some POTS patients.
Between 75 and 80 percent of POTS patients are female and of the menstruating age. Most male patients develop POTS in their early to mid-teens during a growth spurt or following a viral or bacterial infection. Some women also develop POTS symptoms during or after pregnancy.

Prognosis

Most POTS patients will see symptom improvement over the course of several years. Those who develop POTS in their early to mid teens during a period of rapid growth will most likely see complete symptom resolution by their mid twenties[citation needed]. Patients with post-viral POTS will also usually improve greatly or see a full symptom resolution. Adults who develop POTS, especially women during or after pregnancy, usually see milder improvement and can be plagued with their condition for life[citation needed]. Rarely, a teenager who develops POTS will gradually worsen over time and have lifelong symptoms. Patients with secondary POTS as a consequence of Ehlers-Danlos Syndrome will also usually struggle with symptoms for life. In some patients the only cure for POTS is time.[16]
Recovered individuals do complain of occasional, non-debilitating recurrence of symptoms associated with autonomic dysfunction including dizzy spells, lightheadedness, flushing, transient syncope, and symptoms of irritable bowel syndrome[citation needed].

Treatment

Most patients will respond to some form of treatment. Lifestyle changes, particularly drinking extra water and avoiding trigger situations such as standing still or getting hot, are necessary for all patients. Some patients also benefit from the addition of other treatments, such as certain medications.

Dietary changes

  • Drinking more water improves symptoms for nearly all patients. Most patients are encouraged to drink at least 64 ounces (two liters) of water or other fluids each day.
  • Alcohol has been shown to drastically exacerbate all types of orthostatic intolerancevasodilation and dehydration properties. In addition to its adverse effects, it interacts unfavorably with many of the medications prescribed to POTS patients. due to its
  • Eating frequent, small meals can reduce gastrointestinal symptoms associated with POTS by requiring the diversion of less blood to the abdomen.
  • Increasing salt intake, by adding salt to food, taking salt tablets, or drinking sports drinks and other electrolyte solutions, is a treatment used for many people with POTS; however, salt is not recommended for all patients. Increasing salt is an effective way to raise blood pressure in many patients with orthostatic hypotension by helping the body retain water and thereby expand blood volume. Different physicians recommend different amounts of sodium to their patients.[10][17]
  • Diets high in carbohydrates have been connected to impaired vasoconstrictive action. Eating foods with lower carbohydrate levels can mildly improve POTS symptoms.
  • Caffeine helps some POTS patients due to its stimulative effects; however, other patients report a worsening of symptoms with caffeine intake.
  • Tilting of bed to an angle of roughly 30 degrees can also help reduce symptoms. (Feet up, head down.)

Physical therapy and exercise

Exercise is very important for maintaining muscle strength and avoiding deconditioning. Though many POTS patients report difficulty exercising, some form of exercise is essential to controlling symptoms and eventually, improving the condition. Exercises that improve leg and abdominal strength may aid in improving the muscle pump and therefore preventing pooling of blood in the abdomen and lower extremities.
Aerobic exercise performed for 20 minutes a day, three times a week, is sometimes recommended for patients who can tolerate it.[17] Certain modalities of exercise may be more tolerable initially, such as riding a recumbent bicycle or swimming. However, as tolerable, upright exercise may benefit the participant through orthostatic training. All exercise programs for POTS patients should begin with low intensity exercises for a short duration and progress slowly.

Medications

Several classes of drugs often provide symptom control and relief for POTS patients. Treatments must be carefully tested due to medication sensitivity often associated with POTS patients, and each patient will respond to different therapies in different ways.
The first line of treatment for POTS is usually fludrocortisone, or Florinef, a mineralcorticoid used to increase sodium retention and thus increase blood volume and blood pressure. An increase in sodium and water intake must coincide with fludrocortisone therapy for effective treatment.
Dietary increases in sodium and sodium supplements are often used.

An 80 mg capsule of Propranolol.
Beta blockers such as atenolol and propanolol are often prescribed to treat POTS. These medications work by blocking the effects of epinephrine and norepinephrine released by the autonomic nervous system. Beta blockers also reduce sympathetic activity by blocking sympathetic impulses. For some patients, beta blockers increase POTS symptoms. Beta blockers may be dangerous to individuals with asthma or allergies.
Midodrine (Proamatine), is approved by the U.S. Food and Drug Administration (FDA) to treat orthostatic hypotension, a condition related to POTS. It is a stimulant that causes vasoconstriction and thereby increases blood pressure and allows more blood to return to the upper parts of the body. Use of midodrine is often discontinued due to intolerable side-effects, and it is known to cause supine hypertension (high blood pressure when lying down).
Antidepressants, especially selective serotonin reuptake inhibitors (SSRIs) such as ProzacZoloft (Sertraline), Celexa (Citalopram), Lexapro (Escitalopram), and Paxilserotonin-norepinephrine reuptake inhibitors (SNRIs) such as Effexor (Venlafaxine) and Cymbalta (Duloxetine) are even more effective. Tricyclic antidepressants, tetracyclic antidepressants, and monoamine oxidase inhibitors are also occasionally, but rarely, prescribed. A combination of two antidepressants, usually an SSRI or SNRI with Wellbutrin (Bupropion) or Remeron (Fluoxetine), (Paroxetine), can be extremely effective in re-regulating the autonomic nervous system and raising blood pressure. Some studies indicate that (Mirtazapine), is also shown to be very effective.
Medications used to treat attention deficit disorder and attention deficit hyperactivity disorder such as Ritalin (Methylphenidate) and Adderall effectively increase norepinehprine and dopamine levels, thereby increasing vasoconstriction and blood pressure.
In the UK Ivabradine has been used to treat patients with POTS symptoms with good effect. Ivabradine acts by reducing the heart rate in a mechanism different from beta blockers and calcium channel blockers, two commonly prescribed antianginal drugs. It is classified as a cardiotonic agent.
Anti-anxiety medications, such as Xanax (Alprazolam), Ativan (Lorazepam), and Klonopinadrenaline usually seen with POTS patients. (Clonazepam), can be used to combat imbalances of
  • Angiotensin converting enzyme inhibitors, or ACE inhibitors, are used to increase vascular capacity, cardiac output, and sodium and water excretion.
  • Clonidine can work in patients with reduced sympathetic activity. Clonidine lowers catecholamine(epinephrine and norepinephrine) production.
  • Disopyramide, or Norpace, is an antiarrhythmic medication that inhibits the release of epinephrine and norepinephrine.
  • Erythropoietin, used to treat anemia via intravenous infusion, is very effective at increasing blood volume. It is seldom used, however, due to the dangers of increasing the hematocrit, the inconvenience of intravenous infusion, and its prohibitively expensive cost.
  • Pregabalin or Lyrica, an anticonvulsant drug, has been shown to be especially effective in treating neuropathic pain associated with POTS. In fact, Lyrica was the first and, for its first year on the market the only, prescription drug approved by the FDA to treat fibromyalgia. Some POTS patients also report improvement in concentration and energy while on Lyrica.
  • Pseudoephedrine and phenylephrine, over the counter decongestants, increase vasoconstriction by promoting the release of norepinephrine.
  • Pyridostigmine, or Mestinon, inhibits the breakdown of acetylcholine, promoting autonomic nervous system activity. It is especially effective in patients who exhibit symptoms of excessive sympathetic activity.
  • Theophylline, a drug used to treat respiratory diseases such as COPD and asthma, is occasionally prescribed at low doses for POTS patients. Theophylline increases cardiac output, increases blood pressure, and stimulates epinephrine and norepinephrinetherapeutic index, Theophylline is known to cause a wide variety of side-effects and even toxicity. production. Due to its very narrow
  • Women who report a worsening of symptoms during menstruation will often use combined (containing both estrogen and progestin) forms of hormonal contraception to prevent hormonal changes and an aggravation of their condition.

External body pressure

Pressure garments can reduce symptoms associated with orthostatic intolerance by constricting blood pressures with external body pressure.
Compression devices, such as abdominal binders and compression stockings, help to reduce the amount of pooling blood. Compression stockings should be at least 30–40 mm Hg and will work best if they are waist high.[18] Compression stockings should be fitted to achieve the greatest benefit.
Compressions suits (G-Suits) have also been used with some good results.[19][20]

Changes in environment

Some patients report that symptoms worsen with changes in barometric pressure (for instance, before a thunderstorm) and changes from outdoors to indoors (presumably barometric pressure is higher inside) and depending on weight of clothes and coverage. These patients may find relief by moving to a new History
POTS was first named and identified by Schondorf and Low in 1993;[24] however, the syndrome has been described in medical studies dating back to at least 1940. Hypertension associated with POTS has been previously described as the "hyperadrenergic syndrome" by Streeten[citation needed] and as "idiopathic hypovolemia" by Fouad.[25] Hypotension associated with POTS has been previously described as the "neurally mediated hypotension" form of POTS."


References and links can be found on the wikipedia site also.

I really hope this helps people out there that have been diagnosed with SPD and/or Hypermobility Syndrome, Fibromyalgia or other joint conditions, to understand some symptoms they have that were not really outlined in the joint conditions, and that may be outlined under 'symptoms' of POTS.

We do not have to suffer in silence and i know this has not been an 'official' diagnosis by a doctor but i will be showing my Dr this if and when i ever see him again. Or maybe the next one i see. If i see one.