In need of some serious help here - Please!

[Bears Mom]

Ok - I am going to put this here because it is the thing that is causing me the most trouble atm.

To explain - I have had ME/CFS for 10 years - I had it very severly - bedridden for 2 years in a dark room (dizzy, unable to sleep, no light, no sound, pain, migraine etc etc) - I got a bit better and slipped a disc picking up a piece of tissue. The pain for the next 2 years was excruciating - the whole right side of my body was in almost constant spasm and the sciatic pain was unbelievable. I couldn't move and ended up with bed sores - it was so painfulI couldn't speak or cry a lot of the time - I was having to pee in a bowl next to the bed. I took an overdose and woke up sometime the next day partially paralysed. A piece of my disc had broken off and was pressing on my spine. I had surgery.I was hopeful that would be the end of it. A week after coming out of hospital something in the middle of my back went clunk (there is some loss of height in the disc there) - immediately all of the muscles in my upper back, shoulders and neck went tight - it feels like tortion - like my body is being crushed and pulled in several different directions at once. Everything grates and clunks - my head feels like it is in a vice. Sometimes it hurts to breathe. I have tried massage, osteo, chiro, shiatsu, accupuncture - I was refered to the Input pain programme at St. Thomases but wasn't well enough to get to London and back weekly. I have been like this for 5 years now. I am hoping to do a local pain management programme that starts in April next year.

The problem is I have NO money for any treatments - I have maxed out my credit cards and I live on incapacity and housing benefit. I would like to know if anyone can recommend anything I can do at home that might help. I have tried stretches and core strengthening - With the stretching it helps while I am doing it but as soon as I sit up or move everything locks up again and nothing ever feels properly stretched. I did yoga before I got ill so I know what it feels like to become more flexible over time - this no longer happens - there is no improvement in my in the feelings of crushing and pulling and the vice like feeling around my head. Also even pulling my naval in and up slightly causes all of my other muscles to lock in - I have tried to distract this reaction by, for instance, blowing raspberries and shaking my arms as I do it - no luck. I do Alexander Technique relaxation and some meditation but as I'm sure you can imagine I am really quite stressed out and depressed about my situation. I have also lost my relationship and my home to all of this. I feel like I am lost. I feel ill everyday - sometimes I can't even get to the doctor to get my prescription.

Currently the only thing that helps at all and allows me to be able to sit up at all for more than 20 minutesis Diazepam.

I also have Essential Thrombocythemia which is a bone marrow problem that causes my stem cells to make too many (and abnormal) platlets - I just take asprin for this atm although if it gets worse I might have to take some chemo tablets.

ANY advice on where on earth I could start in an attempt to unravel all of this would be really appreciated.

I am going to put this in the pain and fatigue forum as well - I hope that is OK(?)

Good thoughts to all,
Joss

 

[I am royalty]

Oh my heart goes out to you. All I can do is send you lots and lots of Reiki energy and hope that one day your pain and depression will leave you and you will be a happy, healthy person. Curious have you ever tried an Inversion Table or accupuncture?

Positive energy coming, positive energy coming, positive energy coming...[sm=dogrun.gif]

 

[Nephila]

My dear Joss,

I saw your post earlier this morning, and my reaction was was exactly the same words as Jeannie, my heart goes out to you.

I am humbled, and filled with admiration that you have survived all you have been through. Not only that, you have tried so many things where others would have given up or surrendered themselves to the decisions of others.

I am going to have my daily meditation now, andI will ask for lots of healing to be sent your way.

with love and light,
Sue.

 

[Invisible Pink ~ RN]

Thank you both, It is nice to know that people are sending me good thoughts.
Joss
xxx

 

[Ambu]

hello joss - there will be lots of people sending you good thoughts/vibes/reiki after you rpost! Have you tried contacting any local colleges that offer complementary therapies? Some of the students in different therapies will be completing case studies throughout their training and someone might be able to offer you some treatments for free or at a greatly reduced rate. It would be good to have a look for local Bowen Technique students as this therapy is extremely gentle on the body but there are loads of different ones you could look into - it just depends on what appeals to you and location etc. Maybe do some research first about the treatments so you feel more comfortable with talking to the student - they should always be in consultation with their tutors, so could ask for specific information before any treatment begins.

I don't know if this will help but it's worth trying! There are many people who will want to help. Good luck andlet us knowhow you go.

 

[u d]

Hi Dibdabs,

Thanks - I will check it out. I did look for a Bowen person locally without luck and really can't afford anything at all. I also can't travel very far so it makes it difficult. That is why I was asking for suggestions for things I might try at home. I was wondering, for example, if anyone knew of any specific exercises I could do to help release my shoulders and upper back. I have tried some things but no luck - so any suggestions would be very much appreciated and I will definately try them.

Love to all,
Joss

 

[anonomous]

Hey joss - you could try placing a post on the Bowen forum on [link=http://www.thebowentechnique.com]www.thebowentechnique.com[/link] - this is only one of the Bowen forums of course! A lot of the students with ECBS will read the forum and you may find someone willing to get travel to you. Fingers crossed for that. There are plenty of stretches to try that can help to release your back and shoulders, the only problem being how to explain them without pictures! Maybe someone can suggest a website with good photos or descriptions. Make sure any stretch you do is moved into and out of very gently. Sometimes once the stretch is achieved there is a tendancy to think, right, that's done, and spring out of the position, which may do more damage.

If you don't have any blood pressure issues its also worth getting some Epsom Salts to have in a bath. This can be bought inexpensively from garden or hardware type shops - you can get them from chemists, but this tends to be high quality, highly processed stuff for those who need to take it internally. You don't need this quality for a bath. Put about a mugful into a bath with warm not hot water and soak for about 20 mins. Wrap up really warm afterwards and have a glass of normal water then go to bed. It can help to relieve aches and pains and will speed up removal of toxins from the body.

To get some relief from the shoulders you could try placing a tennis ball between your back and a wall and gently moving around it to give yourself a massage. Please be careful with this - as with all suggestions on a forum, there is sometimes the problem that trying ideas may make you feel worse, as you aren't having a full consultation and supervision.

Take it easy and keep smiling
dibs

 

[Eternity]

Thanks - will try those things.
I ahve looked for specific exercises on line but have been unable to find something that helps. It;s all abit beyond the tennis ball statge I think. I need something that will release between my shoulder blades a bit - this particular area is driving me bonkers today - pulling and pushing and crushing and sending out all kinds of odd nerve signals. - arrggghhh! An osteopath said that the joint there is pushed forward towards my chest - which makes it difficult to treat. MRI scans confirm there is a disc problem there - still think there must be somekind of exercise I can do to help. It's the opposite of the normal 'hunched back' thing - any ideas? Anyone? Things that help a bit are dog pose and sitting forward bend. But only while I'm in them...

Joss
xxx

 

[hockeyguy]

certainly worth trying some bowen technique - as dibdabs said, bowen students need case studies to enable them to qualify and the ECBS website is worth looking at - if you register you can also leave a message to see if there are any students near where you live.
Where are you based?
best wishes
welshtherapist

 

[WinterNights]

Thanks Welsh - will do that a.s.a.p.

Love to all,
Joss

 

[brighteyes76a]

hiya joss,
there isnt a great deal i can offer in way of suggestion, but i would just like to say well done for coming this far. you are a very brave soul and i hope it is recognised and your angels help you asap, remember to ask them for help though.
i will send my thoughts your way also,
take care and keep talking here, even if its just to let off steam!

angelfeather x

 

[HisBabyGirl<3]

hello again Joss - right, bear with me I'm going to try and explain a stretch that I hope will help. It sounds complicated (especially written down) but can help to open out the area between shoulder blades. I think it's a yoga posture so maybe someone can give it a name and you could look for pics ina book etc? I'm not yoga based so I don't know what it is - maybe the eagle?
Sitting or standing, raise arms out to your sides at 90degrees with palms upwards.
Move arms together so that elbows cross.
Whichever arm is underneath at this point, raise it up towards your face and turn palm out to face a wall (90degrees away from face)
The object of the next bit is to entwine your arms around each other so that palms are touching. This varies from person to person, so don't worry if palms don't touch, it could be palm to wrist, or forearm area. (This is probably the most difficult bit to explain so let me know if I'm failing!) Arms should be at right angles from body with forearms and hands parallel with your torso and head.
Gently gently gently raise your elbows and fingers towards the sky leaving your shoulders relaxed. When you find a stretch between your shoulder blades try lowering your forehead towards your chest to increase the stretch.
When you have held the pose for awhile gently reverse the whole process.
Repeat the stretch with theopposite arm on top.

Pleaselet me know how that feels but DO IT GENTLY!
dibs

 

[mary c]

Thank You!

Just tried it and think I have the idea - that does feel like it's hitting the right spot. Have a friend who used to be a yoga teacher so I will check with her to make sure i have it right.

Now that is the kind of advice that is really helpful.

Thank you again Dibs!

Will print it out and add it to list of helpful stretches.

Joss
xxx

 

[??Lonely Soul??]

P.S. That is really hard work.... Just done it again and arms ache like **** but - I WILL perservere...
xx

 

[Segepooff]

Have you tried acupressure techniques for your migraines / headaches?

As for your types of pain, have you tried a specialist in alternative medicine in resetting dislocated and / or pinched nerves?

 

[Arraaghhhh...!!!]

Hi Joe- glad you are painless!

yeah - tried accupressure - also think we naturally press and rub the bits our bodies need us to.

What would such a specialist be called?

Joss
x

 

[Bill P]

Hello Joss,

He / she would be called: "Acupressurist ".

Good Luck

Joe

 

[SopReoneseign]

Thanks - lol. I managed to gather that.

I meant what would a 'specialist in alternative medicine in resetting dislocated and / or pinched nerves? ' be called are are you still talking about accupressure

Joss
xxx

 

[lostinlove808]

Hi Joss,

My experience is that the best people for fixing trapped or pinched nerves are those who work aligning the skeletal structure, namely osteopaths and chiropractors. I think that you said that you had tried them before, but perhaps a different one would be worth considering.

I will ask for more healing to be sent your way this morning.

with love and light,
Sue

 

[Mantis]

Hi Joss

Here are some notes based on my girlfriend's reply as per my other posting in the LC forum regarding how she conquered her ME/back injury... maybe worth cherry-picking anything of note ...

With ME, she had to pace herself over the 2yr period, resting regularly and congratuting herself for everything achieved, e.g. making a cup of tea to walking down the road and back. Anti-depressants (or SSRI as they're called) helped with lack of serotin produced and lifted her out of the black hole. She also used an exercise for visiting her body from the inside and telling each part of herself that she loves it, accepts it and its weaknesses but wishes to make it stronger - that one really worked for her.

She then had a car accident a few weeks ago which left her with a back and neck injury - she could hardly move her upper body and was often hunched up. Started having Reiki from a friend of ours (a very very strong practitioner who is also a Sports Physio/Masseure amongst other things) and it's totally transformed her. May be worth checking with NHS to see if they can fund you having Reiki.

Wishing you the best

Simon