Author Topic: Leg cramps  (Read 4926 times)

Hopefulpat

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  • Reason for joining: Patient waiting to see Haemotologist after diagnosis
  • Diagnosed: 25th August 2016
Leg cramps
« on: September 06, 2016, 08:39:51 pm »
Hi,I am waiting for my appointment at London Free for tests and scans to comfirm where and how bad the deposits are. I have suffered from night leg cramps for a long time,and wonder if they are connected with the amyloidosis.Has anyone else had this problem,I took quinine for years,but it has stopped being effective,and have been advised to discontinue it.The haemotologist has put me on Pregabalin to see if it helps.possibly helping a little,but still losing sleep as getting foot and leg cramps throughout the night.Hope to hear if anyone else affected,or is it nothing to do with Amy.

patpinchin

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  • AL - extensive in skin. mouth + palatal nerves '04
Re: Leg cramps
« Reply #1 on: September 07, 2016, 09:47:16 am »
Hi Pat,

Leg/foot cramps can be related to peripheral neuropathy which many patients experience with amyloidosis. It manifests in many ways from chronic pain to tingling and is often in the limbs hands and feet.

http://www.amyloidosis.org.uk/al-amyloidosis/symptoms-and-signs-of-al-amyloidosis/


It can certainly keep you awake at night. I suffer from amyloidosis related neuropathic symptoms but my chronic symptoms are in my mouth where amyloid has infiltrated the palatal nerves and taste buds. It is extraordinarily  distressing. I have been searching for symtom relief for over a decade but so far nothing has helped mote than marginally.

The medications most often prescribed are anti-convulsants used in the treatment of epilepsy.....Pregabalin, Gabapentin, and Duloxetine. Both Gabapentin and Pregabalin had a sedative effect for me during the day leaving me unable to function. Gabapentin in particular. I do take 50mg of Pregabalin at night and it definitely helps me sleep, otherwise I would not so severe are my symptoms. Do you take Pregabalin at night?

I have an excellent chronic pain specialist who has told me that clinical evidence shows that a
combination of neuropathic pain medications works better than a single one for many types of neuropathies. He commonly prescribes a combination of Pregabalin and Duloxetine for many of his patients. He says it works well for many. Unfortunately not for me. It is often a case of experimenting with different dosages/drugs to see which works best for you.

I certainly recommend that you consult a chronic pain specialist. Their expertise and understanding means that they can offer the best advice on medications which work on different nerve pathways. They all work in different ways. Unfortunately the NHS chronic pain service is not helpful where I live as it takes 9 months for a referral and it is about 2 mnths between appointments. I, therefore,  see my specialist privately. This is much more satisfactory for me as I need close and frequent supervision and advice.

Hope this is helpful.
« Last Edit: September 07, 2016, 09:50:15 am by patpinchin »
Pat

Hopefulpat

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  • Reason for joining: Patient waiting to see Haemotologist after diagnosis
  • Diagnosed: 25th August 2016
Re: Leg cramps
« Reply #2 on: September 07, 2016, 09:30:34 pm »
Yes,I have just started a low dose 25mg of Pregabalin last week,it helps a bit,cramps not so severe,but still wake several times and have to get out of bed and hold feet hard on the floor.Sounds awful to have it in your mouth.I have to some extent lost sense of taste,things all taste sweet,so I dont enjoy food so much,but I thought this was due to an awful infection i had in April.It was like shingles in my mouth and throat,my tongue and all my mouth was covered with ulcers which went right down my throat,I could not eat for days,and lost more than a stone in weight,had 2 courses of antiviral,and 3 courses of antibiotics.This made my kidney function go down to 18%,which was very worrying.I hope you find a solution soon for your pain,thanks,Pat.

patpinchin

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  • AL - extensive in skin. mouth + palatal nerves '04
Re: Leg cramps
« Reply #3 on: September 10, 2016, 09:16:40 pm »
Hi Pat,

25mg is the lowest dose of Pregabalin and if it is not helping very much, perhaps your Dr would consider an increase. I find 50mg  Pregabalin makes me sleepy so take it at night.

Very sorry indeed to read of your horrid painful ulcers which led to other problems.

Your change/loss of taste may be caused my amyloid infiltration of the taste buds. This is quite a common symptom. In my case my oral specialist thinks that amyloid has affected the 4 sets of taste buds in my palate except the salt ones. Consequently those have over compensated and have become hyper dominant so I have a relentlessly throbbing salty taste. It is very very hard to endure especially as I am now in my 14 th year with the condiction. I have not found any solution to the problem and have concluded that in my case there isn't one? AL amyloid frequently deposits in the salivary glands too casing a dry mouth. I have that too and have to use a moisturising mouthwash several times during the night. Biotene. It is also important to avoid sugary foods and drinks as saliva protects teeth from decay so if saliva is reduced you are more vulnerable to dental caries. Duraphat high fluoride toothpaste is advised too. Only available on prescription from your dentist or GP. 

I am very vulnerable to lichen planus in my mouth and find that a mouthwash with the soluble steroid prednisolone clears it up very quickly.
« Last Edit: September 11, 2016, 10:35:42 am by patpinchin »
Pat

Nervexol

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  • Diagnosed: last year
Re: Leg cramps
« Reply #4 on: March 16, 2021, 11:21:23 am »

If you have a cramp, these actions may provide relief:
Stretch and massage. Stretch the cramped muscle and gently rub it to help it relax. For a calf cramp, put your weight on your cramped leg and bend your knee slightly. ...
Apply heat or cold. Use a warm towel or heating pad on tense or tight muscles.