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Hello

May 08, 2014 7:51 AM

I am 56 years old. I have been in severe pain, back, neck, hips, legs, feet, hands, since 2009. Was going to a pain doctor, but medicine did not help, he said it was not Fibromyalgia, had no pressure points. He finally said there was nothing he could do! I try to exercise, but ankles hurt so bad it is hard. Lately the pain is getting worse. I am so sensitive to meds, I can not take many with out severe reaction. I push past it when I can, rest when I need to. Use a wheelchair most times when out. Now I get tingly and numbness in feet, hands and face. Doctors do not know what's wrong and do not know how to treat it. I have decided to go to school online to get a MA in New Media Journalism and try and start my own Freelance Writing out of my home. Right now on Disability and Medicare. So is my husband. But with doctor bills we can not survive only on Social Security, we do not qualify for food stamps and our state will not expand Medicaid, if they did we would qualify and we would not pay anything in medical bills. Stress does not help any!

May 12, 2014 1:52 AM

Hello Gothgirl54 and welcome. It sounds like you have a lot going on. Hopefully you can get some useful tips from other community members!? Cool that you are doing your MA in New Media Journalism! Looking forward to reading texts of yours!

May 19, 2014 8:56 PM

gothgirl54-I have been diagnosed with fibro, and am on cymbalta, which does help. however, like most with fibro, I have another condition called Idiopathic Intracranial Hypertension, which essentially means my body produces too much spinal fluid. yes, I've had 2 LPs to release the pressure as the extra spinal fluid causes severe migraines, vertigo, fluid buildup in your eyes, and swelling of the optic nerves (which causes blindness). thank God my vision is still intact, but the migraines are horrendous, as well as the painful joints and trigger points.

I understand what you are saying about disability et al. I think it's great that you are trying to do something while unable to work in a traditional setting. Think of all that you have endured throughout the years. sounds to me like you are a fighter who never gives up. hold onto that fire and let it propel you into making the best of this that you can. believe me, I know it's hard. just keep your head down and lead in with your shoulder!

Seriously, I hope you can find some relief for your pain, and direction for the questions you have. I'm sure you have thought of seeking a second opinion. maybe consider homeopathic medicine too? just a thought. be well.

May 19, 2014 11:51 PM

Gothgril I understand the med issue. Me too. Not much I can take.

As for getting moving you can walk in place inside or do bed yoga. relaxation yoga where you lie on your back only is very gentle.

No I idea about your symptoms. have you been tested for RA or Lupus?

Aug 22, 2014 12:51 PM

gothgirl, I am new to this forum, but I just read your post and I may be off base, but my doctors told me I had Fibro and then I found out it was a misdiagnosis! It took a few years and lots of complaining on tumblr but someone told me too look up Ehlers-Danlos Sysndrome, and bam it was like my life story spelled out. http://www.dynakids.org/Documents/hypermobility.pdf I am the hypermobile type (at least until I can get genetic testing to rule our the others ) but there are at least 7 other variants of this condition, not all include dislocating or hypermobile joints but do include a lot of pain and other possible complications specifically to the vascular system. Anyways I think with the multiple joint issues you are having plus the sensitivities to drugs, (which I have too) the neuropathy, needing the use of the wheelchair and the various other problems I'm sure you have that doctors just can't explain. it can't hurt you to look up and do a little research in this condition. please keep in mind if you do look it up that everyone is affected by it differently, many drs and medical professionals do not understand or have even heard of it and there really are no flat out treatments for this collagen deficiency but it may give you a better understanding of what is happening to you body if you happen to feel your a match for what EDS describes. check out the link I put in it's a PDF written by one of the top EDS practioners in the world. hope this helps. also I use cannabis for my pain relief it's not a cure all but it helps especially when I don't tolerate much else

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