Hip and leg pain

[carolinegigg]

I’ve been diagnosed with pa for around 6 years now! I’ve finally had it agreed by my GP I can have my injection every 2 months as my 3rd month I was a zombie! However, I really struggle with hip and leg pains, any tips on how to sooth these symptoms without pain killers etc? 😁 (my GP was useless I helping me with this question)

[Gambit62 Administrator]

the only thing I can suggest is trying more B12 if they are related to B12, though you may have to take matters into your own hands.

Do the pains get worse the further you get from your B12 shot?

Otherwise, try for a referal to a neurologist

[clivealive Forum Support]

Get your Folate checked carolinegigg unless you are already supplementing with folic acid.

[ruffnut]

With PA you really need inj monthly at least. I get mine every 3 weeks. I find my legs respond to twice daily moisturizing them. They get so sore they feel like they're bruised. But if i keep the moisturizer upmto them they are pain free.

[Jennie16]

I get hip and leg pain too, but mainly in the morning (often wakes me up). It eases as the day goes on and then comes back a little before I go to bed.

I self inject twice a week and I take a multivitamin every day. I know I'm missing something but I'm not sure what at the moment!

[Hidden]

I would suggest that it is important to get a referral by your GP to a neurologist. You need testing for neuropathy. If you have it there are special pain killers for it as the "normal" ones have no effect on it.

I was diagnosed as B12D 3 years ago after the sudden onset of the typical symptoms, my father being diagnosed with PA 30 years ago. I then suffered for the last 2 years with severe left leg numbness and sudden pains in my leg and hip that would effectively cripple me as I simply could not walk.

I have been on weekly B12 self-injections during this whole period (approx 18 months now), and still am, with daily Folate tablet, all prescribed by my GP. It is a slow process but finally I was tested for everything, ECT, head and spine scan etc, etc, and was diagnosed after all these as having severe peripheral neuropathy, caused by the B12D.

Having the B12 injection weekly has addressed all the typical B12D symptoms except for the feet numbness and left leg/hip pains, constant tingling in my hands and left side tinnitus. I was prescribed with a neuropathic pain killer, which was changed with no explanation after about 4 months (to a dearer drug I would add!) last November. Within 2 weeks the pains had almost subsided and I could walk again almost normally. This has continued to improve such that I have currently now been totally leg/hip pain free for 3 months and am currently reducing the pain killer, from the original 2 (75mg) a day, to 1 a day and currently to 1 every other day with a view to stopping them completely in the next month or so. So far so good and no signs of pains reappearing! The numbness in both my feet is still pretty much the same and varies from day to day, even the time of day, and I seem to get waves of numbness still in my left lower leg for no apparent reason accompanied by the feeling of impending cramp but never does so. BUT I am so much better now, my life is pretty much back to normal.

Consider the above and have a chat with your GP, I hope my "story" helps you.

[BethattheBeach]

I'd suggest you begin a diary of symptoms and present this to your Doctors. Continued deficiency of B12 WILL cause permanent damage toyour legs so I'd not delay in getting more frequent injections. Many of us found it simply easier to learn to self inject. I simply inject when my feet pain returns and in that way I manage my symptoms much better than my doctor can.

Don't delay and goodluck.

[greenbexy]

Have you had your vitamin D checked recently? A deficiency in this can cause aches and pains too.

[Marz]

Sometimes when we have deficiencies in one area it can also happen in another. Have you had a VitD test ? If your GP will not do it then you can order on-line for a Home Testing Kit from City Assays in Birmingham - website of the same name. 28 GBP's is about the price. Low VitD can sometimes be the cause of aches and pains - especially in major joints. VitD is anti-inflammatory - a steroidal pro-hormone - and needed in all cells of the body. So more than a vitamin

vitamindcouncil.org

grassrootshealth.net

[Siobhan1965]

I find I get terrible joint pain when my folate levels aren’t high. I’m on 5mg daily prescribed. When I try to reduce the pain and stiffness returns.

Also need daily iron pills, again prescribed. Think you might benefit from trying folate, even for a month or so to see if it helps.

Good luck

[Jcilom]

Hi, I find that gentle exercise helps greatly for hip pain. Lay on your back with knees bent, roll knees to one side, while keeping your shoulders on the floor. Hold for the count of 30 {or longer if you can, and roll to the other side. Repeat a few time a day. For the legs, massage helps. This is what works for me. I know that we're all different.

Jcilom

[carolinegigg]

Thanks all for your help