He is having really bad pain in his legs to the point he cries. Because of his cognitive issues, I can't understand everything he is trying to tell me so I don't for sure know what he is experiencing. I've been driving the Neurologist crazy with my calls asking for help. He was taken off Mirapex several weeks ago and I'm wondering if he should be put back on it but doctor says no. Took him to Chiropractor and he has muscle atrophy because he can't walk because of pain. He is trying to help him but so far nothing is working. He has been causing a scene in the dcotors office because he hurts so much and they make him wait. I;m at my wits end on what to do next. Only meds he is on are Namenda for dementia, Celexa for depression and Sinemet for Parkinson's. Any suggestions??
I am so frustrated that I can't do anythi... - Cure Parkinson's
I am so frustrated that I can't do anything to help my husband with his pain and doctors aren't helping.
Oh so sorry. Sounds so bad but also sounds like nobody is giving you the right help. Keep on complaining is my advice though know this is not much help you are on my long list of prayers xx
He must having muscle spasm . I went to the ER last week because of this they gave me muscle relaxer .
I certainly hope this is resolved for both of you. Sometimes the pain seems to burnout on it's own. Make sure you take care of yourself.
I'm so sorry! Can't they at least give something for pain? I have been in a wheelchair for one week after falling twice. My back and legs are hurting too and I take 2 - 650 mg Tylenol. But I also take baclophen, which is a muscle relaxer. I can take Norco for pain but it constipates me and the Tylenol helps just as much! Hoping you can get some help. How awful for both of you! Do you have some support?
Blessings,
Carol <><
I too share your pain but not to extent you have it. I get a massage which helps and my legs get a rub down with a pain cream (Kenopropine). Take Body/Back Aspirn
and the pray for the best. Sometimes the hot tub helps. ~~/Dennis
find other doctor. I had problems with foot and legs when I first started on cinamat' but taking it for a longer period of time It does not seem to be a problem May have to increase dosage, but see a doctor first gettome.
Find another doctor. Try to find a Neuro that is a Movement Disorder Specialist. I'm so sorry that you and your husband are being treated so poorly I went through something simiiar and I know how frustrating it can be. I'll say a prayer for you right now.
So sorry for you both...saying a prayer for you both. Yes, find another team.
Would a pain management clinic be a possibility? Presumably they are used to analysing pain problems e.g. as to whether whether it is PD itself, the sinemet, or a knock -on problem from the tight muscles such as sciatica which is treatable. If the pain is worse in the morning, is he having continuous release sinemet or something else to make sure some anti-PD drug his system overnight. Would massage help? There are lots of answers and your medic doesn''t seem to be looking for them.. I had pains in my legs at night when first dx and the PD nurse said "your not supposed to get pain at this stage"!!! If you lose sleep that exacerbates the PD symptoms
Raven it might be totally unrelated to the PD. You might want to consider going to his normal doctor there are test they can do to check the blood flow in his legs . It could be he may have a blood clot in his legs especially if he's not as mobile as he once was. As paddyfields suggested massage could also be very beneficial.
I am sorry; Pain has been a big complant of mine, ask your Dr. if he could be put on Ultram 50mg, and take 2 every 6hours. It helps m,e.
Regards
ERIC
Get a new Doctor. Ask for prescription for pot in pill form. Smoking has faster results.
Find a new doctor! My husband's neurologist gave him an epidural in the neck vertebra to ease the pain several years ago, and that pain has never returned! We are back to weekly visits to the chiropractor to help with mobility issues, and a few more visits to the physical therapist who was recommended by our GP. It takes a team of experts and constant drug modifications to maintain a decent quality of life. We also see the urologist quarterly and keep a detailed spreadsheet of ALL the meds ( a very important step in keeping organized). My husband was first diagnosed over 20 years ago.
As pain might be due to something additional to PD I would also recommend that your husband have a thorough workup for B12 deficiency/pernicious anaemia, and get checked for diabetes. Both of these conditions can be the cause of peripheral neuropathy which can give leg pain similar to what you describe. If he gets the B12 testing make sure that he has not been taking any iron or folate supplements for a couple of weeks beforehand, and has not eaten a lot of meat protein in the previous few days as they could skew the initial results. Diabetes testing is quick and easy, B12 should consist of an initial b12 test and if this is low another at least one to see whether he is producing something called intrinsic factor. In fact I would recommend anyone who is having legs pains like this along with a general increase in fatigue and nighttime sleeplessness, and cognitive issues, to have this testing done. But insist on a proper workup, as the reference ranges are set very low, and many people with this deficiency get missed. There is a grey area into which people can fall, while having the condition, and it is a condition which does need to be treated early to avoid permanent damage.
Can you start with Motrin or aleve on a scheduled dose. Once the pain is under control, it is better to stay on top of it than let it get bad. Also ask the md/pharmacist if he can try flexeril as a muscle relaxant maybe once at night daily. I'm a nurse. Pain is the fifth vital sign and shame on them for letting hinm suffer. Try to stay away from the opiates - they can cause terrible constipation and increase fall risk,.
I've put him on Advil Capsules - 3 - 3xday plus Advil PM before he goes to bed (that doesn't seem to do anything for his sleeping). I will ask pharmacist about the Flexeril and see what she says. Thanks for the info.
Raven
If i remember your husband has had meds changed. Have his PD meds been reduced and what medication does he have overnight? is it sufficient? Could his pain be partly due to being undermedicated?
Have you read up on restless leg syndrome ? Lots of info online and there is also a forum on health unlocked. Your post made me wonder about this. The treatment is an agonist such as Mirapex
Yes, Movement Specialist took him completely off Mirapex over a month ago and he is only on Namenda and Sinemet and nothing special before he goes to bed. I've called asking about restarting the Mirapex but doctor say "no" and he will not offer any pain medication. He did, however order in-home physical therapy to get his muscles moving so hopefully that will give him some relief. I can just see him going downhill!
This happened with me last summer, out of the blue I had so much pain from the elbows down with my hands drawn up. I had never experienced pain like I it, I really just wanted to die. After about a week it did get better.
If you do an online search regarding PD pain, there is muscle spasm pain and CNS pain. CNS pain is what my doctor told me it was and there was not a lot they could do for it particularly since I take Azilect. He did say that some PWP will improve on fibromyalgia meds but they also are contraindicated with Azilect.
I hope your husband improves because I understand how bad the pain is.
I have made many calls to our Movement Specialist and so far all I can get out of him is in-home physical therapy - which I'll gladly accept. He will not order pain meds, any additional meds and I can't get in to his office until April as he has no openings. I am on my 5th doctor!My husband has now taken a turn for the worse in that he barely walks and talks now. I can't get him to the car to take him to the doctor even if I had an appt. Don't want to take him to hospital as I have done that many times before and every time he comes out of it worse than when he went in. I'm praying the PT will at least get him mobile again. The Phamacist did say I could try Advil PM to help him sleep at night but that only lasts 2 to 3 hours. He's barely eating - only picking at his food - even the foods he likes best. I'm certainly caught between a rock and a hard place!
I could never do without my Mirapex, it helps with the restless leg syndrome and muscle cramps. My cramps in my calves and feet were getting s o frequent that I had botox shots in some muscles. Helped now for over a month. Maybe this info will help. I also take Aleve, twice a day every day for pain. Good luck!
My neuro prescribed Mirapex for my RLS. But my acupuncturist/naturopath ( who used to be a surgeon ) told me to take magnesium chloride. Almost immediate relief. So glad, I didn't have to start back on a deadly agonist again! Mucuna pruriens instead of Sinemet for Parkinson's. Switching to natural products if possible, exercise and good whole foods, has started to turn everything around for me. Trying to get off corticosteroids for years of asthma meds, is my next goal. Already got rid of the allergy part.
Thanks for your response. I will definitely try the magnesium chloride on my husband and hope for some results. I am a great believer in natural healing. Haven't tried the Mucuna as my hubby is on the Sinemet med but will ask our movement specialist about.
Hi Raven,
I am just thinking about you and your husband, and am wondering how things are? Have you had a chance to try magnesium chloride on your husband. Were you able to get the physical therapists to come to your house for treatments?
PT is coming 2x week but so far haven't been able to do much because of the dementia and brain not talking to body to follow commands. Tried the magnesium for a couple of days but it gave him the urge like he had to urinate all the time when he didn't so I stopped it and it went away. Not sure what that was all about. This morning he was in horrible shape and I thought about taking him to hospital but he went back to bed and when he got up he was perky again and even went outside. Now he is back in bed not feeling well. I will call the PCP and try to get appt. this week to have his swollen legs and feet checked. I just never know from moment to moment how he is going to be. It is just killing me watching him deteriorate as fast as he is. Let me know if you have any other suggestions. God Bless!
I think that's one thing for me to go on about taking the natural way to treating Parkinson's and therefore using coconut oil, magnesium, and mucuna. But it's another thing altogether if I had to go through what you and your husband is going through right now. This morning, I found a website that talks about Parkinson's Disease Dementia PDD. In it it mentions a drug that is being used :
A neuropsychologist can objectively diagnose PDD and prescribe medications (cholinesterase inhibitors) that can be helpful and should be considered. Have you heard of this? I don't know if you have to be under the care of a neuropsychologist or not. Anyway, here is the website aabout managing non-motor symptoms - although you have that and motor symptoms as well to deal with:
apdamidwest.org/APDA_Midwes...
Did the magnesium help w/ the pain at all?
Thanks for the website info and I will definitely check it out. I did get my husband to the family doctor today and he couldn't find any reason for his leg and feet swelling and pain. He checked for arthritis, sciatica, joints, etc. but did send him to the lab for some blood work which will check his B-12, Magnesium, renal functions and some other things so we will see how those come out. I love the coconut oil and use that quite often. I was giving him regular magnesium tablets - is this the wrong kind?? We see the Movement Specialist the middle of April so will ask about the Mucina then. I was also told today not to give him any over-the-counter sleep aids as this will affect the brain and his oxygen levels.
We retired to Medellin, Colombia. So the magnesium chloride I was given by the acupunture/naturopath here is in powder form which is diluted in water. Not convenient. I'm going to order some magnesium chloride tablets from the States. The mag. chloride form is more readily absorbed than the mag. oxide is what I read. I think it's wise to stay away from the
OTC sleep aids.......Can you get medical marijuana where you live? That will bring him much needed relief, too, I would imagine. At this point, it's all about trying to live with this demon as easily as possible, don't you think? Your husband is lucky to have you.
If you can get on amazon.com and search magnesium cloride they have flakes which people mix with water in a spray bottle and use on their leg muscles, etc. Wonder if that would work? There were a lot of great comments on the flakes. Others said they mixed the oil with water and the taste was terrible. No, we cannot get legal marijuana here. If you find something that you think may help, let me know and I will order it and try it on my husband.
Dear Raven, I feel very badly for you and your husband. The medical/doctor/homecare situation - availability and affordability situation in the US is deplorable!!!
If you research magnesium, there's info out there about taking magnesium and using epsom salts in bath tubs to let your husband soak in. The relief should be right away. Maybe the pharmacist can help. After the pain is managed - you can start looking into mucuna instead of sinemet. I was able to switch over with no tiltration. I used to take 2 Sinemets ( 25/100) 3 x a day. Now I only take 1/2 sinemt with the MP - 3 times a day. No one knows the long term effects but I'm willing to gamble that it would still be better than long term on sinemet. Hope things get better for you two.
I have had this horrible pain and I can tell you that sometimes it hurt so bad that I wished I could die. I complained to my first neurologist who acted like I was a "whiner". Changed doctors and the next one uped my Sinement dosage and gave me Requip which helped plus Neurontin.. Dr. #3 gave me Repip XL, had a hard time taking it. At last Dr. #4 who is a Movement Disorder Specialist seemed to understand my problem and explained to me what the meds did and the correct way to take them. He has had be cut back to 4 Sinements (25/100)a day added Azilact and Requip at bedtime. So far I have been pain free unless I forget to take my Sinement. Also keep his legs warm, I live in Oklahoma where we run the air conditioner more often than we do the furnace. I have to be careful in warm weather not to get too cold. Hope this helps. God bless you both, it's a rotten disease!!
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