My Window Of Hope

[ShirlGirl]

I have had promblems getting into here until now so haven't been here for some time.
Please excuse my typos; oh yes I am a great speller untill I hit the key board. Smiles.

I started a new thread as I really did not know where to post this.

Let me start by saying that I have the following diagnsois.....
Advanced stage 3 Primary Lymphedema; Full body Osteoarthritis;
Lipomatosis; Nueropathy of the right leg and foot; restless leg Syndrome; Lipedema and on and on.

I have suffered emotional upheaval; humiliation and rejection for so many years due to either no diagnposis or being wrongly diagnoised.
This all started about 39 years ago and it wasn't untill summer of 2003 that an Anesthesiologist actually told me what I had.
Oh yes I had been a nurse untill my legs gave out on me and hadn't ever heard of primary Lymphedema.

Then I was sent to a vascular Dr and there are only about 3-4 in all of Ontario and they just dabble in it and really don't understand much about Primary Lymphedema and or Lipedema.
They also don't seem to want to take the time to learn more about it.
See there isno money in these diseases,
And there isn't even a Lymphologist here in Ontario as yet..

Any ways I have tried the wrappings. MLD and even wasted hundreds of dollars on compression garments. Put so many miles on the car and sepnd more on gas. It makes me want to cry.
I keep hitting dead ends.

I have 2 prs of pantyhose 1 pr never out of the bag that were supposed to be custoim made for me and then I find out that the Dr gave me the wrong compression and they were far too tight.
I have another pr and they had to be sent back and then when they still wern't right my fitter wouldn't send them back again.
I have tried the thigh hi's and all they did was force eveything up into my abdomen and thigh area.
I already have a hug lipoma on the left thigh the size of a grapefruit and a smaller one on the left side; so don't need more Lymphedema there.

Then we have gone to knee hi's and they push it on up to the knees etc.
This is the way it now has been explained to me that its like taking a ballon and then blowing some air inti it and tying the end do the air can't get out.
Its trapped there just like the Lymph fluid.
If you aplly pressure to one area the air will only bulge up in another area.

Thats excatly whats been happening in my body.
Plus the decompression garments restrict my knee movement and therefore cause me far more pain when i take them off.

Everything we have tried so far only helps to MANAGE a problem and does not solve it. I am now having Lymph up in my chest and gagging and choking spells. I know all of the horrible complications of all of this and have felt like I have been backed into a corner with no where to go.

I must say here thatI have read a lot on this forum and do not 100% aggree with all that is said and thats okay; everyone to their own opinions.

Dr Reid may understand Lymphedema and has done his best to present a way to manage Lymphedema; but he sure doesn't understand all about Lipedema, by any means.

Someone also said somewhere on here that Primary Lymphedema isn't painful.
I guess they don't have advanced stage 3!!!!!
Well that is simply NOT true, just ask all of my Drs and specialist.
Maybe Secondary Lymphdema is not painful I don't know as I don't have that kind.
But all the lumps and big bumps and ares of my Primary Lymphdema is excruciating at times.and thats on top of my 24/7 pain of all the others.

I do know the differnet kinds of pain in my body and also that I amdeveloping some Fibro now. This brings on an entirely differnet kind of pain again.

I have prayed and searched and prayed and searched and finally a friend I have heard from for several years contacted me.
She has both Primary Lymphedema, Lipedema and had some fibro.
She has had Light laser treatments for over 2.5 yrs now and says she feels like a new woman and most of her pain is gone.
She is also able to work full time now.

So this thrust me on into researching Light laser treatments and during this time I have met personnaly several people who have had good results with other health issues.

I contacted a Chiroparctor near here who givesl Light Laser teatments; from there went to see still another Dr just to make sure I was on the right track.

I was so blessed to get a personal consuktation with Dr Khan who has been on of NORTH AMERCIA"S leading Orthopedic Surgeons.

All opf my Specilaist and Surgeons are professors and tops in their fields with exception of the vasular one re Primary Lymphedema.

During the later years of his surgical work as Dr Khan was travelling around the world re his work; he kept coming across Laser Treatments in many other countreis and hearing and seeing amazing results. Thus, instead of retiring and spending all of his money, he threw himself into futher studies of laser.

What resulted form all of this is he design one of the world's best Light laser TherapyEquipment. His equipment is now being sold all over the World and has been approved by the FDA in both US and Canada. Dr Khan has worked in the surgical field all over North Amercica but is a Canadian; so now he resides here and has his head quarters here as well.

I am learning a lot about Laser treatments and how they can help the body to heal and also found out that they will promote the body forming new Lymph channels allowing the Lymph fluid to get out of the body. This same approach takes place with new blood vessels.

When I first started on this new pathyway toeward better health I only had a ray of Hope; but now I have a window full of rays. I am so optomistic that at last I have found a way out of this hellish life of pain and misery with out filling jy body with medications.

Thanks for listening to my story.
Shirl

[guit30]

Greetings,
You sound like you have lots of same issues I do, finally made it to physical therapy after taking the traetment team a year to diagnose limphadema, the lady, therapist, kept asking me what caused the lymphadema, I kept saying that I have no idea, just one of those primary lymphademas with no chemo, radiation, or anything like that to set it off.
I had been wearing compression stockings for 2 months already, the therapist said, these are way too tight , I said, that is what I was perscribeded by my vascular doc.
BTW, this is no fun, exhausted, already have chronic pain and biplor illness. I was pumped today. My insurance company will pay 7,000 bucks for my compression pump. The therapist wanted to get me in threre for lots of visits, I said, doctor said education and home device is all i need, not a ton more copays
jIM

[pinkbear]

ShirlGirl,

I understand your frustration and PAIN. I have Primary Lymphedema and seems I've had it most of my adult life. It has really flared and gotten out of control the last 6 mos or so. MLD treatment is working. Slowly, but working.

I also have Lipedema. It makes this entire process much harder to live with. I got very tired of people telling me I needed to loose weight and exercise! I was eating only 1200-1400 calories per day and exercising about 45 min per day. And still no weight loss. In fact my legs and butt kept getting bigger!

I have nothing magical to say other than I understand. And yes, my PL DOES HURT! Much of my body is so tender and the bottoms of my feet are the worst! I stuggle to walk after sitting for a while. HOwever, I keep my fact to the sun and try not to get down.

I also have fibromyalgia to mix it up a bit.

You are not alone,
:)

[mkatona]

You can get the same red light therapy without using a laser. See my post under Treatments.

I am getting much relief from a $40 red light therapy unit from Amazon.com

mkatona

[pinkbear]

I'm to the desparate stage now. I've been seeing red light lazer therapy on TV. It's new to my area I think. It's being advertised for weight loss but I'm thinking it may help break up my lipedema so things can move and lymph fluid will finally move. Anyone with more info on this type of treatment please write to me.

[Trish]

I have never found red light therapy that is approved for lipedema. Therefore personally I would be very cautious about investing in the "machine." The only laser product that I know of that is approved by the FDA is to treat lymphedema after breast cancer treatment. Information on this can be found at their website http://www.riancorp.com

Trish

[guit30]

PB,
What is Lipedema?
Jim
PS- Praying for you

[pinkbear]

can't go into lipedema now Jim. not feeling brain strong enough but will get back to you. sorry. thanks for the prayers. really need them.

trish,
I'm not going to purchase one but am thinking of trying it at a "spa like" treatment place for weight loss.

[Adia]

Jim, I know it has been a bit of time since anyone posted, but i saw your question and was curious myself...so i though i would post the results of what i have found. I am sure if there is anything missing Pinkbear can cover it later when she feels up to it.
thanks
adia

Lipedema is a disorder of adipose tissue distinguished by five characteristics: 1) it can be inherited; 2) it occurs almost exclusively in women; 3) it can occur in women of all sizes, from the seriously underweight to the morbidly obese; 4) it involves the excess deposit and expansion of fat cells in an unusual and particular pattern – bilateral, symmetrical and usually from the waist to a distinct line just above the ankles; and 5) unlike the “normal” fat of obesity, lipedemic fat cannot be lost through diet and exercise. Surgery is highly controversial, and in many cases, can make the condition worse.

Lipedema usually is triggered at puberty, but can trigger or worsen during or after pregnancy, at peri-menopause, and following gynecological surgery. If lipedema is diagnosed early, which currently is very rare, it is possible to prevent a significant expansion of lipedemic fat cells, and to alert patients to their heightened risk for obesity so they can take appropriate action.

Estimates of the incidence of lipedema vary widely, and range as high as 11% of the post-puberty female population. Even if the number were only 5%, that would mean more than 6 million women in the United States alone.
Symptoms
Patients tend to gain weight in lipedemic areas and lose it in non-lipedemic areas. Obese lipedema patients who undergo bariatric surgery lose fat primarily from the waist up. Even anorexic women can starve and exercise away "normal" fat but retain lipedemic fat.

The classic early-stage lipedemic profile is a woman who looks like a size 8 from the waist up and a size 16 from the waist down with disproportionately large, column-like legs. As lipedema progresses, patients become increasingly heavy in the lower body. The additional, expanding fat cells interfere with the pathways of lymphatic vessels, and patients can develop secondary lymphedema, a condition known as lipo-lymphedema. Many lipedema patients cannot tolerate the compression garments associated with conventional lymphedema treatment because the underlying lipedemic fat is very painful, and those patients therefore are at risk for the side effects of uncontrolled lymphedema, including recurring blood infections and fibrosis.

Women with lipedema also are at very high risk for obesity because the lipedemic fat cannot be lost, and because as the condition worsens, patients become progressively less mobile.

[Cindyy]

You can get the same red light therapy without using a laser. See my post under Treatments.

I am getting much relief from a $40 red light therapy unit from Amazon.com

mkatona

Hi,
$40 is the most suitable price that a buyer can expect...
So tell me that how can i get this red light therapy ...
Thanks in advance..

[guit30]

Thanks for answering about lipedema, I have been having lots of pain in my legs and have been unable to tolerate my compression garments at the present. Swelling has not increased significantly. Doing my skin care and self MLD.
Jim