Looking to talk to people with mild hsp and share experiences

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  dave | Coping strategies | published 3 months ago | Originally written in English Looking to talk to people with mild hsp and share experiences

  Hi as the title says im looking for people with mild hsp symptoms as it seems quite rare.

  in my case i have stiff legs and pes cavus feet which causes me the most problems even with orthotics . I work and have a normal life ,however on a night after work and on weekends i just want to rest. Which brings me to my next problem which is friends and family thing im just grumpy a d lazy as i dont feel like being on my feet unless i have to, which just adds to the frustration to me.

  Anyway i would like to hear from other people with similar problems and how you cope with them.

  Many thanks dave
  4 replies to the topic — see all replies

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    twinmom published 3 months ago | Originally written in English

    Hi Dave....I have only been diagnosed a short time. I have the pes cavus feet issue which is pretty painful, but have had progressive weakness in one leg with pain and increased stiffness. Thought all my problems were related to my back and then was told after a fall that I must have a bad case of tendonitis in my foot and leg. Ends up, all of this was related to the HSP. I guess it is probably still considered mild, although am starting to consider othotics and possibly a cane for at home or when out walking quite a bit. I feel much like you.....I have a normal life with 4 kids and am an Executive Director of a non-profit. However, I also don't much want to do anything at night and weekends bc I hurt and it seems just easier. I agree, it is very frustrating and hard for the family too. This is my first time to this forum as I have been spending all week trying to research and absorb this news that I have this disease. Would love to have someone to talk to that is going through the same thing!

    Thanks,
    Kerry
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    dave published 3 months ago | Originally written in English

    Hi kerry sorry to hear you have hsp , i did exactly the same as you when i was told researching and trying to quell my own doubts (i still have many).The next step for me is to try to give the orthotics a chance before looking at any form of drugs as I'm paranoid that once i rely on drugs the disease is going to progress without me being aware of how bad its getting.I might sound silly but it at least gives me some illusion of control.

    Anyway i hope you find a way to cope physically as well as mentally which i find the hardest out of the two.

    many thanks
    dave
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    twinmom published 2 months ago | Originally written in English

    Hi Dave.....I have been researching and trying to find more information. Lots of people recommend getting physical therapy and that has been really helpful to folks. I hear you on the drugs.....and I wonder if I'm "bad enough" to require meds....who knows? Anyhow, I am going to look into the orthotics and ask for a prescription for PT. Figure it is worth a shot. I have had a sudden progression in this past month and broke down and bought a cane for night when its the worst. It hasn't been so bad using it at home. Helps take some pressure off.

    There is a Hereditary Spastic Paraplegia Foundation that has a listserve for people with this. I just signed up a couple days ago and have already found it helpful. MIght check it out also! Take care!

    Kerry
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    dave published 2 months ago | Originally written in English

    Sorry to hear your getting worse I hope pt works for you.I am struggling at the moment mentally and am really down and feel trapped as I earn a decent wage I have a big mortgage etc however I don't think I can do my job for much longer and cannot afford to retrain and still support my family.I cannot even sell the house as in the current climate its not worth what I owe on it.

    Sorry for being so depressing I hope you find something that works for you.

    Many thanks dave.