Hi, I've just joined PA because my husband was diagnosed with PA about 2 weeks ago. At this stage we're hoping that it is just PA he has as his symptoms are not usual. He is suffering from a lot of stiffness and pain, mostly in his large muscles. This is very bad at times and at other times not so bad. The pains are inclined to move around. His legs might be bad one day and the next it could be his arms. He has had to stop all physical work and excercise. After mild exertion he is tired and wants to sleep.
In his first blood count his B12 was under 50. He has antibodies to intrinsic factor but surprisingly his bloods are good.
So far he's had 6 injections of 1000 mcg of B12. Basically I'm wondering is pain and stiffness a symptom. He has no pins and needles.
Thanks. I'd be happy to hear if anybody has had a similar symptom.
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LuceyLocket
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I wouldn't say "just" PA, since because of this he developed a severe B12 deficiency. I think it will take time for him to recover, but the odds are good. Although I am a lot better, I still have muscle pain, fatigue and a burning sensation in my feet even after 15 months of treatment with b12 injections twice a week. But the pins and needles I had in my hands and feet were gone. I'm 50 years old, I also have PA and, it seems, gluten sensitivity.
Thanks cquadros, So you also had muscle pain. Did you have stiffness also?
My husband finds it difficult to get up off a chair or to walk up a stairs etc. This has all happened very suddenly. He's 61 years. He's also coeliac.
A few weeks ago he could have climbed a mountain.
I don't see references to muscle pain and stiffness anywhere in the society's material. That's why I'm very worried that he might have another problem besides PA which could be causing his stiffness and pain. If we knew for sure that this was a symptom of PA then he could relax and know that it will just take time.
No, I don't have stiffness. Was his magnesium level ever checked? Hypomagnesemia can lead to muscle stiffness and is not rare in coeliacs. It's also a side effect of PPI (like omeprezole)
When you say his bloods are good I am wondering which ones Was Folate included and VitD and Ferritin ? They are not included in a Full Blood Count and usually have to be requested.
Folate is not included in the Full Blood Count - so was it tested ? It works with B12 in the body in an important way so good levels needed. VitD often LOW in range when B12/PA is present - so worth asking for a test. Ferritin too - stored Iron is good around 70.
Thanks Marz, Yes his folate is within range at 8.6. Also his ferritin at 85. I don't see a result for VitD so it probably wasn't done.
If we knew that others with PA suffered with stiffness and pain in muscles we could rest easier and just wait it out. He believes it is neurological as the pains keep moving around.
I have a B12 issue due to surgery for Gut TB and Crohns - and yes I have all sorts of issues. Also had spinal surgery. B12 is involved in the maintenance of the Myelin Sheath that protects the nerves - so as he was so low the pains and stiffness could be the healing process as the nerves come back to life ... it does take time.
I have read that when receiving treatment for B12 it is advised to also take Folic Acid/Folate. What was the range for the Folate - needs to be around mid-range.
Muscles need stimulation from the nerves - so if the nerves are under functioning then it is a possible cause of stiffness. I am not a Doc - but sometimes work things out that I have experienced !
I also have had a lot of muscle pain, stiffness as well as exercise intolerance. In fact, the muscle problems were the first symptom I noticed.
At first, my legs felt a little tired, but only occasionally and only when going up stairs. I was super busy and didn't think anything of it. Then one day, it was like a switch had flipped -my leg muscles became so stiff I could barely walk. The stiffness got worse and spread to my arms, followed by muscle pain, some cramping, feelings of extreme coldness, and later on, muscle tremors.
I have what the neurologist described as "classic PA" symptoms, with the pins and needles, numbness and so on. The neurologist told me that muscle stiffness, pain and cramping is not unusual. In addition to the B12 injections and iron capsules (my folate level was high, but I'd already been diagnosed with low-iron anemia), he advised me to try B complex supplements, magnesium (I suggest magnesium bis-glycinate) and vitamin E, to see if they helped. He also suggested keeping my legs straight when possible, taking warm baths before bed and trying gentle massage.
Thanks Oregonian, your reply is very helpful in that yours began with the muscle pain and stiffness. He's been getting steadily worse with those symptoms all over summer. He's on statins and had begun to believe that they were the cause even though he had no problem with statins for 8 years. It's been a scary time, not knowing, so I do appreciate your help. He hasn't had the pins and needles but maybe they would be next on the list !!
Good to know you're over it all and there's light at the end of the tunnel.
Sorry your husband is so unwell, good he’s on b12 injections now . I hope they are frequent enough , guidelines say every other day until no futher improvement with nurological symptoms . He will need to take folic acid daily to help utilise the b12 even if folate in range . My OH suffers from stiff muscles in the mornings and was investigated for rheumatism but his inflamotary markers ( CRP / ESR ) came back as 6 and 8 so not too high . It would be worth asking your GP to check for rheumatism. But his b12 level of 50 is extremely low and he needs very frequent injections . Hope he feels better soon .
His b12 is very low so it’s goid he is getting the loading doses. The way you describe your husbands stiffness sound just like my partner a couple of years ago. In the end I diagnosed him as doctors were lost. He had polymyaligia. Have a little read and mention it to doctors. My partner had to take prednisone for one year and is now back to normal. He also really struggled to get up from the sofa. He said he felt like 80, was 55 at the time. All of this could be separate from the b12d. Take care.
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