My name is Michelle and I was diagnosed with early onset PD this past may but I have had symptoms since 2012. By the time I was diagnosed I could barely walk with a cane and was not very functional at all. I've been on sinemet 25/100 4x day and that has really helped a lot (no more cane) but still had problems with wearing off and muscle pain, fatigue and dystonia (never had a tremor). Last wed my Neuro tried to switch me to the long release sinemet and it went very badly. Extreme pain and totally off by that afternoon. Since then I have talked to her through the nurse 3 times. She had me switch back right away but it's like the normal sinemet didn't want to work well anymore. Second call she added requip .25 3xday. I called again today because I'm still in extreme pain with very little time even partially on and was told well you'll just have to wait and see if the requip helps, I'm not doing anything else until your next appt (which is aug 23rd). I tried explaining that I am in severe pain and have already missed work multiple days. Pretty much told too bad. I don't think I can last 3 weeks like this i hurt so much plus I'll probably lose my job. Any suggestions?
Hurting : My name is Michelle and I was... - Cure Parkinson's
Hurting
You might try CBD oil it definitely helps my unexplained pains.Doesnt get rid of them but makes them bearable.
Also (I know you won't like me for it) but exercise is a must.The more pain the more exercise helps.
I know you think you can't because of the pain but believe me ,regular exercise ,despite the pain makes all the difference.
If you don't do any regular exercise you need to start little and build up .
The PD warrior programme is excellent.I bought the book and video from Amazon and do them at home when I can't get out on the bike/play tennis/ or go for a walk. The secret is you must keep moving.for PWP the old adage use it or loose is was never truer!
When you say pain is it all body stiffness, joint problems or does it feel like you are being stabbed in the back daily or other?
It's 2 different kinds of pain both muscle, never joint related. When I'm really off I have dystonia in my left hand and left leg that feels like someone's pulling or twisting and muscle tenderness in both legs and arms (worst in left calf). Both kinds improve when I'm on and used to be controlled well by the sinemet. It wasn't until they tried to switch the meds that it got so bad. It feels like it did before I was on sinemet.
Try different muscle rubs. I find that an icy/hot type helps with cramps and blue emu works on aching, toe curling. Also epsom salt baths are wonderful esp. in the morning at the start of your day and before you go to sleep at night.
Cuureamed (Cicrcumin high dose) and 600 mg Ibuprophen nightly and EXERCISE!
Generally the medical profession will tell you that pain is not caused by PD and probably that is why the response you got from Neurologist . Most Parkies will tell you that they have pain, usually controllable with Tylenol or other over the counter at various strengths, the pain when treated , is not usually incapacitating.
I suggest that you ask your family Medical Doctor to check your pain and that you look at allergic reaction to the PD medications and to any statin drugs , and he could help as well in your search for your new Neurologist. The neurologist you are seeing obviously has too many patients and is far too busy.
Local PD support group meetings are a good source of first hand information and recommendations on local and specializing Neuros.
Hope you find relief
Hi,
I don't have any great advice unfortunately, however, I can totally relate to medical professionals that don't really "get" the seriousness of dealing with early onset PD. I wonder how they would cope if they lost their job which could have been saved if they received prompt, effective, medical attention. My husband experiences lots of pain, soreness, discomfort, when he is "on" it disappears. He has had some luck with "concerta" for a supposedly unrelated sleep problem. It is a stimulant drug that they give to people with ADHD, works differently on Parkies apparently. When he has to work he takes Concerta and Sinemet.
I've never been an advocate for drugs
But if u can get ur hands on any weed
Just to take the edge off
Also re the ext/cont release
My pharmacist recommends taking the regular sinemet to "fill in"when the other isn't working
I hope that helps
Be well
C!
I have had the most care and concern from my naturopath. She has helped with pain and anxiety more than my neurologist.
I hope you have some resolution...no one should be left to live in pain....
Have you tried sugar free and gluten free diet. I know it is hard, but exercise is a must, you dont use it you WILL lose it
I had pain with Rytary - I had to go off of it. I went to the emergency room three times
Magnesium seems to help with my PD pain.
Believe it or not exercise can be harmful if your body is not ready for it. You have to treat the dystonia first. For me I took cyclobenzaprine for 4 years until it stopped having an effect. I then spent 2 years with my back all tied up in knots. It was not until I took an Alprazolam that my back felt better. It was at that time WE discovered that it was anxiety that was tying up my back. 200 mg of sertraline and 3 alprazolam 0.25 mg a day normalized me enough that if I stay home and limit my time with the outside it is enough. That is why I am experimenting with cannabis. I do not want to over use prescribed drugs if I do not have to, but when I need a little something to get me through a day not at home.
It's definitely hard to exercise with dystonia. It's not that I don't want to exercise. I used to run a lot, even ran one full marathon, before I started having foot and calf cramps that were the beginning of this. I loved running. Now I can't wear regular shoes because of the dystonia in my feet. All I can wear is crocs.
I have learned that as for walking, if you walk backwards it will release the muscles that are cramping. Get everything toxic out of your life. Watch a lot of what ever makes you laugh. Laughing is the biggest help for me. Wake up with something you look forward to do that day. AS IT'S POSSIBLE live a stress free life even if it means you will have less money. That's my to-do list for now...
Let me know when you are ready for the next step.
try some muscle rubs on your feet. I find that icy/hot types help on cramps and others like blue emu helps release and relax my toes.
epsom salts bath and foot soaks are also helpful
P.S. it is possible to use cannabis to get a relaxed feeling without the stoned effect.
Sinemet 25/100 4x day is not a huge dose. Try adding some of the long release to that, or just more of the same.
take a regular sinemet along with a controlled release. I take 1 sinement at 11:00 am then my next dose at 2:00 pm I take a regular AND a controlled release and that works great until 6:30 then I take 1 regular sinemet and that lasts the evening. I think this is what you should do.
Thanks for all the comments. I want to up my sinemet dose because I know it would help. I don't think they've ever had me on a high enough dose but the neuro doesn't want to up it.
I take Magnesium Citrate 250 Mg every night before bed. It helps minimize leg muscle cramps. Then if I still have cramps I take one of the two muscle relaxants that my general practitioner gave me prescriptions for - Cyclobenzaprine 10Mg for night, and Methocarbamol 750 Mg for daytime.
I too have dystonia in one foot and could hardly walk around the house without major pain. The dystonia forced me to walk on the outside edge of my foot and made my foot feel like the muscles were tearing it apart. So I decided I had to exercise to relax the muscles. Exercising in athletic shoes didn't help because my toes would curl up inside the shoes. So I started walking around the house in slipper socks that had rubber spots on the bottom. This helped because my toes couldn't curl as I walked. So I started doing the treadmill very slowly wearing slipper socks. My treadmill has a bar I can hold onto on each side. Now I am up to a mile a day at a pace of about an 18 minute mile - which is a fast walking pace. As long as I do this almost every day the muscles in my foot don't cramp and I can walk with minimal pain. If your toes curls as mine did, it is important to get up to a fast pace as soon as you can safely do so because your toes don't have time to curl between steps.
If you live in a state where you can get medical marijuana, muscle cramps is probably one of the reasons that doctors can prescribe medical marijuana. It is one of the approved conditions for medical marijuana prescriptions in Colorado. You might want to try CBD oil. Almost all of the THC has been removed so it it wouldn't cause problems with working. There are different kinds that some people use as an external rub and others take drops under their tongue. I haven't tried this yet but probably will soon.
I have a nice callous on the outside left foot also.
Exercise is a must.
It seems to me you have a problem with your neurologist. It s YOUR body, you have to live with it every day. He or she must treat you not like a child, but as a grown up person, speciliast in your desease and your body. If you want to take more sinemet he should cooperate with you, as long as it not exagerated.
You were on a balance and the balance was disturbed. Not easy to get it back. Try to find a new balace with a new doctor who is listening to you and is taking you seriously.
HI I Have the disease for 15 years .At first it was steady ,then it started to progress , and I found my self on max meds and at the end stage, My only options were DBS., or take part in study with infusion pump , with steady infusion of Dopamine during the day and off at night .Sense the later was done in NY in Broncs [.Like that better] but was to far, I got the DBS.It was a9 hr surgery ,where you are 1/2 time awake , because they have to test your reflexes , so that have to wake you up from nice ,comfortable slumber to uncomfortable misery .They tell you about this specifically about no nerve endings in a brain ,so no pain. So OK no problem rite? But you see what the neglect to tell you that everywhere else you feel very much and in those cut up areas before they expose your Brain there is nerve endings and IT HUTS LIKE HELL!!!!!! But I was lucky I strive this and got over it. I called my surgeons the DREM TEAM , because rite after the procedure I felt better almost normal. My meds started to wok better and I walk better. Miracle IN NJ.But another bomb exploded .I got infection MRSA [Vanko resistant staphylococcus aureus.] My wires had to come out, pick line put in 6 weeks heavy duty antibiotics IV 3 times a day administered by my husband , because I did not want to go to rehab ,where they would not cause me anything, but they charge my insurance 30000 thousand $ for2 weeks stay in rehab and q 6 hr IV ATB .Where the LPN was allowed to start IV . But who ever train them forgot to tell them , they must prime the line and get the bulbs of air out before they connect the IV to PT. Well being a RN before gave me some clue.To my horror , she connected me and started to run the bibles in to me. I felt the sucking sound on my heart as it enter it.I must have said something rile of the cuff as I proceeded shut the IV of , and teach the lady haw it should be done. Sorry I hope you understand I am not a nasty person and I am not advertising me being retired nurse , but this scared me. Oh by the way , for the privilege giving the IV my self at home the insurance charge me 3000$ for the meds and supplies .Go figure. I know this sounds long winded ,but bear with me it gets better.So after the ATB and sufficient waiting period ,the whole think was preferment again . Sense the head never healed completely some scabs remained I had infections set in one after other . Has multiple wash outs, total of 7 brain surgeries and wash outs. My battery pack infected also so they took it out and 1/2 of the wires . put the new battery un the other site and 1/2 of the wires on Site stay in.I been lucky tho . Despite all the set backs it help
my life improved walk better I Feld better and my life was once ,ore ,y own again.I enjoy playing Bridge with 8 of my friends, went on frequent outings to shore with my family.Learn French and playing the piano and teaching crochet .Basically enjoy life. I would not be happier with anybody then with my dream team and done it again and again. The wires were in for 8 years they just stop working . have problem walking again and generally mowing .Meds don't work well either.The neuro changed me to Rytary . So far it works .But my walking has not improved ,my handwriting is atrocious, my vision is blurred cannot reed books . THANK GOD FOR AUDIO BOOKS ,THE REEDERS ARE SO TALENTED. It's getting bad. Heaving lots of pain thinking of Cannabis . As for supplements I take Stress tabs Complex D3 2 tabs Krill oil Co Q10 Osteobyflex triple strength 2tabs a day which helps my joints Magnesium 250 mg 2x day keeps my BPdown ad helps with leg cramps. I take Ginco biloba 30 mg for my memory which is great.As you can see the supplements are doing some good . Oh yes I take 3500 B1HCL is a neuro protectant according to some big PD Italian Dr. B1 does not stay in your body the excess is excreted in your urine.It make some changesin my condition +.
As for exercise I BELIEVE is good for you I Dit 30 min on stationary bike fast as possible for me. I feel better after. do Yoga fo beginners cannot doe anything complicated my legs don't hold me. I modified to me .As long I feel it it's good.
had to slow down on bike because of fall. Dit not brake anything but badly bruised it hurts to much. Gave to heal so I can return tp my normal and I will.PDis not going to beet me. At least THE END
PS. Ewen it is long I hope you reed it and get some inspiration .
Thank you Maja
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